Almost... Ready to Roll

I officially have my surgery date- January 10th.

The crutches are on their way. Physical therapy is set. Blood is getting drawn.

It's always comforting to feel like things are falling into place. It can be a little nerve racking to wonder if you're doing the right thing, luckily my hip has been telling me that this is exactly what I need to do with a little misplacement the other day. I think that most people would see that as a complete negative sign, for me, it's oddly comforting. It tells me that there is no question that my hip needs a little, or a big, tune up and now is the time. I'm ready for this.

Starting this week I'll be pumping myself full of Gatorade and Cream of Wheat in order to prepare to give blood this weekend. Gatorade works miracles for me pre and post-op, we've found out first hand. The theory is that since my BP is so dependent on my blood volume, adding rich fluids (like Gatorade) helps to keep that regulated and hopefully prevent passing out post-op (or after giving blood). I'll be doing two auto blood donations to have on hand post-op in the event that I need a transfusion.

My crutches that are on their way are hopefully going to be the perfect solution for my EDS body, and specifically unstable shoulders. The goal is to be able to use them, with PT before I go into surgery so that we can have some ground work done and hopefully have a slightly smoother recovery post-op.

Until January 10th, I'll be making the most of walking freely on my own two feet!

Time to Get Creative Again: PAO and EDS

This morning I saw my hip specialist. I had an idea of what he was going to say, and it has always been something that has been in the back of our heads as a possibility and something I would likely need down the road. It turns out that road was a little bit shorter than we once thought. 

My hip dysplasia (meaning I have a shallow hip socket, so the head of my femur does not have enough support) has become more unstable, requiring a PAO (Peri-Acetabular osteotomy). This procedure is centered around bone work to essentially rebuild my hip socket, providing more support to the ball (head of my femur) of my hip. By doing this I will be more stable, my pain will be reduced, and the amount of stress on a labrum will be reduced. I have always had borderline measurements for this procedure, but my hip has moved over the past couple years (like we thought it would) and my symptoms are more dominant. 

There is still a lot to think about and go over; that is something that EDS has taught me. Luckily, my hip surgeon is one of my very favorite people on my team, he gets EDS and takes all of my past experiences with surgeries into consideration. He realizes that I am not the textbook patient and that we always have to be a little creative with recovery and getting me to where I need to be. 

It's time to get creative and work out the logistics about how to make this surgery and four month recovery EDS friendly. 

Time for a Tune Up

Attending a holistic nursing school we are always taught to center ourselves and to take care of ourselves first, as nurses. If we are able to do that, we will be better nurses for our patients. Being a busy working college student, it can be challenging to take that advise sometimes. As the leaves are changing not only literally, but figuratively, it's time to take that advise seriously. 

As an EDS patient it can be very easy to ignore pain, especially when you are accustomed to living with a certain level of discomfort. It can sometimes be hard to tell if there is something really going on, or if it is just the normal discomforts of EDS. It can be a bit of a catch 22 sometimes. I work really hard to not allow EDS to take me down or control me. But, I am also conscious of the fact that I have put a lot of work into my body, allowing me to be where I am today, so I want to protect it and all that hard work. 

It's time to for a tune up with a couple of my favorite specialists. 

The first on the list; my right hip. This is the first hip that was operated (scope & Z-plasty of the IT Band) on. I've been having ongoing issues with my SI Joint for a very long time now. It will usually come and go for long periods of time. It's been back recently and more uncomfortable than ever. I've discussed before wether this is related to my hips or a completely separate occurrence, no one really knows. I have an appointment scheduled for next month with my hip specialist to hopefully develop a plan to gain some relief and get a better idea of what's going on. I also want confirmation that my Z-Plasty is still holding up, because my hips are been a little more mobile then they should be recently. 

I say this every time, and I'll say it again. Even with these mild issues, I am forever grateful for how together I am today. I don't think anyone would have predicted this success several years ago, and if they would have, I certainly wouldn't have believed them. EDS continues to teach me so many things not only about myself, but about everyone else as well. 

A scar does not form on the dying. A scar means, I survived. 

A Nurse To Never Forget

This year is flying by. 

I'm going to switch things up this post- I usually just update on how my body is doing and things to watch for and think about with EDS, but not today. Today I would like to share a part about how my journey is changing my life and changing how I see our medical world. 

If you don't already know, I am a nursing student (almost half way done- woo hoo!) at a holistic accredited school. When I was searching for colleges I knew that I wanted to be a nurse because of my previous medical journey and I decided that I liked the sound of having a holistic accreditation, but I wasn't exactly sure what that meant- until this year. 

Holistic nursing is about treating your patient, not the sickness or disease. It's a beautiful way of thinking and I honestly believe it creates better nurses- and I know that even more after being treated by many different nurses, the majority of whom were not holistic thinkers. One nurse always stays in the back of my head- she was my nurse after my first big knee surgery (the right knee re-reconstruction). After surgery I was in extreme pain and they were having trouble adjusting my pain pump. As my pain grew I got a migraine and was nauseous. She could have done many things- most nurses would have given me medicine to reduce my symptoms or would have pushed to get my pain pump. This nurse let the head nurse know that there was something wrong with my pump and while that problem was being taken care of she sat with me in my room at 3:00am and she gave me a massage. No one told her to do this. I didn't ask her to, my mom didn't ask her to- she just did it because she was taught to treat the patient. She stayed in my room for the majority of the night. That nurse showed me what medicine is supposed to be about. And that nurse changed my view of the entire medicine world. We are here for our patients and we must make them the center of our care in order to make people better. What that nurse did was such a simple thing, it didn't require any additional medications or supplies. Not only did she make me feel better by relaxation but she showed me that she cared. That allowed me to trust her and know that she was going to get me though that awful night. 

That is the kind of nurse I want to be. 

EDS has taught me so many things about myself as a person, but as I move forward in my education I have the pleasure of discovering all of these wonderful things that EDS has taught me about the entire medical world.