Journal

  1.No school up on-campus for Fall semester. School starts on Monday, and the doctor told me that unless I had some miraculous recovery (which he didn't find likely especially since it's a life-time/chronic thing we're dealing with) over the weekend he didn't see how it would be even be a possibility. I agreed with him and understand exactly where he's coming from. Although, I may try and see if there's a couple of online classes I could perhaps pick up--giving me something to still do, keep busy, and keep progressing towards my degree.

  2.There's nothing else we can really do--because there is no cure or really any treatment (other than the anti-inflammatories, pain meds, surgery, and physical therapy) for the ehlers danlos. So, he asked if there was any chance of getting in sooner to the specialist in Washington, but I told him that I'd talked to them again but that there's no more opening (the doctor is only in the office once to twice a week) but that they'd call if something came open. So he wants me to finish the steroid pack/treatment, go back onto my old anti-inflammatories and take them (because that's already the strongest dose), continue taking my ultram (a non-narcotic pain med), and then he increased my other pain medication a little bit so I can take those as well, as needed. Then, we will wait and see what Dr. Byers, the specialist in Washington, says and if he has any ideas and/or suggestions.

  3.Finally, my doctor was a bit worried about me using my crutch that I have been because of the strain it puts on my upper body. I told him that that's partly why I've just been using the one crutch--so that I wouldn't use the other with my shoulder that I just had reconstructed--that I don't use them at home, but they've wanted me to use it while I'm out, not necessarily to take the weight off but more to help stabilize me. I explained to him that it's kind of between a rock and a hard place right now--use the one crutch and put strain on my upper body to help stabilize me so that I won't trip, fall, or have any problems or don't use and risk tripping or falling and causing more damage. So, he's suggested that I don't use my crutch anymore when going out, but rather use my wheelchair (with someone else pushing me)--not because I would be wheelchair-bound but to help try and preserve my joints as long as possible. He said that my joints are just wearing out fast, it's part of the disease process, and there's nothing really that we can do. So, we'll use the wheelchair to try and help calm and slow things down.

It was hard to hear stuff because I'm stubborn and I want to be able to go and be out doing alot of stuff. I think I'm still trying to let this having EDS and knowing not to do certain things is still sinking in sometimes....It's finally been almost exactly one year--to the day--of when I was diagnosed and before that I was very, very active with sports and running around doing things (because even after I'd have numerous injuries we didn't know what was wrong and I'd just keep trying).  Things are okay though--you just take each day as they come and am grateful for all that I have! I truly am blessed with so much! Thank you for all the support from everyone on here--the prayers, hugs, thoughts, and friendships!!! I'm so glad that I found this website! Thanks everyone!!!

So I have my lovely collagen disease that makes my life so eventful! Well, yesterday was one of those VERY eventful days! My mom came in and woke me up and I hurt horrible right when I woke up--not the greatest thing to wake up to, but, sadly, it's not that uncommon for me to wake up in pain. Anyways...My mom helped me do my physical therapy stuff for my hip, and then she left to go to church. I usually go to church at a different time, so I was still just laying in bed resting. She had told me that it's okay if I didn't go today--maybe I should just stay home and rest--and I told her that I'd see how I was feeling.

Well, I gradually started getting ready because I really wanted to try and go (one of my friends was going to be leaving to go back to school for fall semester and so I wanted to see her). I was hoping that taking a warm bath and resting while trying to get ready in breaks might help the pain, but not yesterday--that pain just wasn't going away! Finally a few hours later I had gotten myself ready and was heading out the door. One of my good friends, Eric, called me to see if I was already at church or if I was coming. I told him I was on my way and I'd see him soon, and he asked me if I was okay (because I was late and didn't sound the best on the phone) and I told him I was okay I was just having one of my worst flare-up days ever! I got to church and went in and sat with my friends, and as sunday school got over and we were heading out the door my best friend, Jenna, came and was talking to me. She's so sweet, she looks at me and was like 'Jackie, I'm not trying to sound mean or anything, but you don't look very good. Are you okay? You look like you're either in a lot of pain or sick.' I just looked at her and told her that I wasn't okay and it was both--I was in horrendous pain and it was making me sick! She was like 'would you like me to just take you home?' But I told her that I wanted to try and stay for the rest of church. So we started walking to go down the hallway towards the chapel. Jenna, being so sweet and always watching out for me, asked if I would like to hold on to her--for extra support. I had my crutch that I have to use with one arm (the other arm I had surgery on so I can't really use a crutch with that one yet), and I held on to her arm with my other hand. As we walked, very slowly I might add, down the hall I stopped (my shoulder popped a little bit) and just stood there. She stopped and looked at me and was like 'are you okay? let me just take you home.' I just started crying and I was like 'Jenna I hurt so bad and I don't feel good.' We, Jenna and I and a coupld of our other friends, stood there for a minute, and all of a sudden the pain got so bad, I got so dizzy, and I just said 'Jenna, I don't feel very good' and bam...I passed out!!!!

Jenna and a couple of the other girls caught me and laid me down. I was kind of in and out of it.  So, Jenna called my mom and someone else called 911, and my mom came to the church, the paramedics came, and the ambulance. They said everything--like my vitals and stuff--looked fine, but they better take me up to the hospital to check everything out. So, off I went--I in the ambulance, my mom driving, and my friends still at church.

So, we get to the hospital, and they had to move me between beds and everything and the pain was just horrible--I cried like everytime they moved me! Luckily, the doctor that came in to see me knew some about Ehlers Danlos, so that was very nice! They ran lab work, did a CT on my head, chest x-ray, and a CT on my chest. Everything looked okay--my heart was okay which was great! So, they let me come home, and I've just been staying in bed all day today! If I try to get up or anything the pain and dizziness just comes back. I mean, I'm still in horrible pain just laying down, but it's the lowest amount it can be right now compared to sitting up and/or getting out of bed.

The doctor said she thinks that I have costochondritis again--which is inflammation between my ribs and my sternum, so everything is inflammed and pushing on things! She said it's because of my Ehlers Danlos and the ribs and sternum not being so tight and strong that they're just slidding over one another and slipping and stuff. Which made sense, because like the day before I had sneezed and felt a little pop in my ribs which hurt, and yeah. So, I'm on my anti-inflammatories, pain meds, and just laying in bed! I go back to my family doctor tomorrow morning to have a follow-up and see what to do!

I hate having Ehlers Danlos sometimes!!! It totally sucks trying to even just sit up and having such horrible pain in my chest, through my ribs, and a massive headache (from my head hurting and then my kneck popping and making it worse) that I can't even function! I mean I'm so grateful for the health that I do have, for my family and friends, and just being able to live, but it's just hard sometimes!!!

So, I guess we'll see what the doctor says tomorrow and go from there! I'll try and write again tomorrow on what's going on! Thanks for the hugs and for everyone being there for me...I love you guys!

Okay...so one thing--one big thing--that helps me when I'm having hard times is writing poetry and things...it helps me to express how I'm feeling and everything. So, I'm sure lots of my journal entries will probably be things--poems and stuff--that I write to help get things out. Here's one that I actually wrote a few years ago (like a year after my dad and step-dad passed away); I was telling one of my friends about it (here ya go Kim) and told her I'd write it in a journal entry. So, here it is (this one is kind of more religious in trying to deal with things):

 "Where to Turn..."

My mind is a maze--

A maze with many different paths,

Many turns and windy trails--

Deadends everywhere you look....

Where to go?

Who to turn to?

This way or that?

Him? No it's a trick...

I plot,

I plan,

I'm getting out of this mess--

There must be some way...

Could I go through it?

Around it?

Over it?

Can I make it on my own?

Nothing seems possible--

Not on my own,

But there's no one near me--

I feel so alone...

I pull out my map--

Not your typical map,

But a special tool--

I can choose to follow it, take it in, learn, or work on my own...

I study...

Seek, ask, and find...

Learn about the paths and deadends?

How can learning help me?

Give it a shot--

Study and learn...

Tears build up,

Heart swells,

Along the paths and in the deadend,

There it is--

The solution, light, and guide for everything...

My Heavenly Father...

In the maze,

I fall to my knees,

Open my whole heart,

Words come out connected to tears--both freely spilling...

Warmth, love, comfort,

Unbelieveable feeling--

He's there, He's with me, He'll help,

Just let Him in...

Eyes open,

Tear stained cheeks,

Standing up slowly,

I look forward....the path is straight, the walls have fallen, and a light shines ahead!