Update: Life after PAO

I haven't posted on here in a very long time. I started this blog to help others going through the PAO process and dealing with the life changing condition, hip dysplasia. Since my last post I got into grad school to become an occupational therapist, got my hip story published in Onward!, and got engaged!! I've learned so much through everything that's happened. I didn't even know it was possible. I also had a really bad fall last year that affected my back and SI joint. Which ultimately affects my hips. But to get back on topic, let me share with you some of the things I've learned from dealing with hip dysplasia, a newly diagnosed connective tissue disorder, and chronic pain....

1. Even the most empathetic of individuals don't understand the intensity and struggle.
I am surrounded by the most incredible people, however, it's hard to understand the daily struggles unless you've truly been through it. My pains are "invisible" to many people. I always try to keep a smile on my face. I've come to accept my condition and all that comes with it. However, sometimes because of this, people don't understand the times that I need a little extra help or patience. I always try to keep a brave face. But like anyone dealing with this amount of pain consistently, sometimes my bravery isn't enough. And that's OK. It's OK to be vulnerable, emotional, and open. Give yourself time to do this for a moment, then get back out there and live. Live your life with the strengths you do have. Do the things that you CAN do. And when those people come along that try to understand but just aren't able to, help them by communicating how they can help, how they can be by your side, and how they can help you through the times when you can't do it alone.

2. The problem will always be with you and that's OK.
I was always in denial. Denial of the true nature of my problems. I thought, I'll be normal again, I just have to work hard. And then I didn't meet my expectations time and time again. Until I came to the conclusion, it's OK. It is what it is and it's me. I am still me. Even though it affects every aspect of my life, I can still live my life to the fullest. I can do all the occupations that are meaningful to me. It's a struggle but it's MY struggle. It makes me who I am. I'll never be "normal" again, but I'll always have the moments I persevered and overcame the hardships. I'll always have the times I found true friendships despite my disabilities. And I'll always have what makes me, me!

3. Balance of daily routines is vital to a successful and decreased pain level.
I've learned about  occupational balance (balance of occupations in your daily life) and have taken that to heart when finding ways to have a successful life. Ive found that balancing things throughout the day helps decrease my pain and symptoms. I can't sit, stand, walk, etc. for long periods of time. I have to balance these together and take breaks. This is the key. However, there are those times that it's not possible. For instance, I had to volunteer at an event where I stood for three hours. The night after.... WAS HELL. Luckily, my fiance knows how to help when it gets this bad. He massaged my back and helped me get to sleep. I don't know what I'd do without him! Having a support like that helps you stay balanced throughout the day because you always know they are there to catch you on the bad days.

4. Learn, learn, and then learn some more.
I've found that being educated about your condition helps your recovery and life overall. You can make informed decisions more accurately and change little things in your life that make all the difference. For instance, getting out of your car by pivoting, putting two feet on the ground, then standing up. Trust me... makes a big difference! Or learning correct body mechanics when doing daily activities to increase joint protection and energy conservation. I use these every day. Also, make sure to read upcoming research, treatments, and ideas out there. There's usually always something new you can try.

5. Learn to listen to your body.
Your body knows best. Respect your pain. Don't let it control you, but don't ignore it either. This is a fine line you have to dance on everyday day. Find your balance and when you fall, don't be afraid to get back up again.

Everyone has there problems in life. I've learned that this is mine. Despite its difficulties, these problems have made me a better person, OT, and partner. I'm able to be more empathetic and understanding with the people in my life. And I am grateful for that.

1 year 9 months and 1 day POST-PAO

It is 1 year 9 months and 1 day POST-PAO.  It feels like my surgery should be a distant memory but it's not.  The experience still lives with me every day.  The struggles,  the accomplishments, and everything in between.  I can run (and walk for that matter) without pain! I don't think of my hip every second of every day but I do still think of it often. I plan on celebrating my 2 year hipiversary by finally getting my dream tattoo. It will be a rose vine growing out of my scar.  I want it to represent how much I have grown and blossomed since my initial diagnosis. There are certain moments over my journey that still stick out to me so to show how far I've come I'd like to share them here:

-I remember waking up in pain from my hip years ago not even knowing why.
-I remember hanging out with friends in 8th grade while on crutches because I couldn't walk on my hip.  My friend carried me on her back across a busy intersection.
-I remember the day I got my stress fracture in my hip and how long 1 mile felt while walking back to the car.
-I remember the moment I was diagnosed and the feeling of a mix between disbelief,     fear, anger, sadness and relief.
-I remember the feeling of happiness and accomplishment completely overwhelming me when I ran for the first time after surgery.
-But for whatever reason this sticks out the most...I remember one very definite moment where I finally accepted my diagnosis.  I was walking down a hallway at CSU and realized I couldn't walk from my classroom to my car. Before this moment I was in denial. When this happened though,  I realized how serious everything was and I was finally able to truly prepare for my surgery.

I have come so extremely far since these memories.  I am so thankful to have gone through this experience with such support from family and friends.  I wouldn't have been able to get to where I am without them.

5K!

I ran a 5K! The Color Run! I ran pretty much the ENTIRE thing!

It was a few months ago but I forgot to post my photos, so I thought I would now...

I have come so far since surgery...

Never Give Up!

So, I haven't posted in a long time! I thought I would get you up to date on everything that's going on with me. I have had some incredible improvements! First of all...

I ran on the treadmill for 10 minutes straight!!! NO WALKING!!!

That was a HUGE accomplishment for me! There was no pain and not even any tingling that I have been feeling every time I ran after surgery. I'm finally getting better and doing this helped me realize that. Before I did this, I felt like I was platoeing and didn't seem to be getting any better or any worse. But FINALLY I saw some improvement! It meant a lot! I just can't wait until I get to run on the road again. I think about that all the time. When I finally am able to, I am definitely not going to take that for granted. I don't even take walking for granted any more. 

So the next big accomplishment...

I walked 3 miles today!

I know I've done this after surgery before, but this time was special. It was on the marathon route. I haven't walked the marathon route by myself in almost 2 years.These little accomplishments aren't little at all to me. There are so many things I am thankful my body is able to do. I am thankful I can walk, run on the treadmill, put my shoes on, walk up stairs, drive the car, sit cross-legged, sit on the ground and be able to get back up, and so much more. 

I saw a man walking with his wife in the park today. There was something special about this man...he was using a walker. He inspired me because I know how difficult it is to do. He made me smile and I just wanted to tell him my whole entire story. I'm back to blending in with the public (something I wanted so bad in the past) and now I want someone to know about my hip! It's only natural to want to talk to someone sharing the same experiences as you. I didn't talk to him. But I am proud of him. I am proud that he went out for a walk and is working hard at recovering. Watching him struggle made me think about everything I've been through and how far I've come. I'm so thankful that I have progressed so much over the past year. I've worked really hard, been through really tough times, and right now I only have positive things to say about my hip. Something, I thought I would never be able to say.

To all those reading this that are going through hip dysplasia, there is a light at the end of the tunnel. I'm just starting to see it now, but it is there. Be patient, work hard, and keep family/friends close to help you get through. Never give up.

Photo by: One Hip World

The little things...

I noticed that I was always focusing on the negatives about the hip dysplasia (because honestly, there were a lot more negatives than positives at first). So for this post, I decided to list all the positives that my diagnosis of hip dysplasia has given me:

• I started going full force into Occupational Therapy! And I love it!
• I am substitute teaching and meeting great people
• I got to go through an experience that not many people my age get to go through, and I learned so much along the way!
• I experienced a great physical therapy team that coached, taught, and pushed me through the toughest time in my life
• I LEARNED TO WALK AGAIN! (How many people can say that?! Booyah!)
• I can run without pain!
• I can go out drinking with my friends and not bring crutches or a cane along (I was on crutches for my 21st bday)
• I can play catch in the park with my boyfriend (I did that for the first time today since surgery!)
• I can stand all day at work without being in pain!
• I can sleep throughout the night
• I can actually fall asleep without medicine!
• I haven't had to take pain medication in a long time!!!! 
• I can park far away just to get myself to walk longer
• I don't need to carry a foldable cane in my purse!
• I don't need a walker, cane, crutches or any kind of device to help me walk from my living room to the bathroom!
• I learned that I have great family and friends that would do anything to support me :) 
• I have an excuse to get an awesome tattoo over my 10 inch scar!
• I now have my very own walker, shower seat, transfer board, bathtub handle, sock aid, an abundance of exercise bands, etc.
• I can easily get in and out of the car
• I don't get weird looks when out in public like "Why does that young girl have a cane?" (I actually have been told by various people that "I didn't need that". I just looked at them and told them "No, I really do". How naive can people be?!)
• I am sitting here typing this and can say that I am NOT IN ANY PAIN WHATSOEVER! (Do you know how huge that is?! I never thought I'd feel this great!)
• The list can go on and on...

9 months and 20 days POST-PAO!

Two years

This time two years ago, I was preparing to run my first marathon, finishing my Bachelors degree with high hopes I'd be starting a PhD program, and got a job at my internship that would start right after I graduated. So much has changed over the past two years.

By July of that year, I had to put my marathon training to a halt due to a stress fracture. To my surprise, it ended up being much more than just that. I had to quit my job and didn't get into any PhD program I applied to. I felt like I slammed against a huge brick wall. All the things I was striving for was ripped out from under me.

That winter my childhood friend, grandma, and great aunt passed away along with being diagnosed with a life changing condition, hip dysplasia. All of these happening within two weeks of each other. After all this happened, I started going to school again while preparing for surgery. After one of the most stressful semesters of my life, I had the surgery. I spent the summer recovering and saw huge improvements. That fall I kept going to school and realized how much my hip really did affect my life.

It's now two years later and I'm trying to figure out which race I want to run in the summer. I am able to run on the treadmill but won't be able to run on the roads until the summer. I decided the 5K Color Run in July would be a great way to celebrate. But, I still keep thinking about that marathon I so desperately wanted to complete. My plan is to be able to run the half marathon in September of 2014. Hopefully, one day I'll be able to complete a full marathon.

My hip still does affect me every day and I am constantly thinking about it. I don't think that will ever change. However, what I am able to do with it will. And even though my life is completely different as I planned, I am looking forward to see what it will be like two years from now.

9 months and 3 days POST-PAO!

I graduated!

I officially graduated from physical therapy this week! I have been going to physical therapy for 8 months! Now it is up to me to continue my exercises. I'm going to miss all the people that I used to see every time I went there. However, I am excited to be able to do it all on my own. :)

Jogging, jogging, joggin'

During my physical therapy session today I jogged on the treadmill again! This time was twice as long as the last time I jogged. Also, I increased the jog to 4.0 miles an hour! It felt so great to be able to do this! I just kept thinking about how much I have been through and how far I have come.

As for right now, my left side is still weaker than the right, but it is MUCH better than it was before. I still have a ways to go in recovery. I will most likely be stopping physical therapy at the end of this month and it will be up to me to keep at it! I will probably start up again in the summer when I can start running on the road.

A concern right now is that I have a little bump on my left hip. It is most likely scar tissue and doesn't give me any pain. I just need to keep an eye on it to make sure it doesn't increase in size. My thigh is still numb and I am planning on it being that way the rest of my life. It might take two years to come back, but it most likely won't. The best thing for me to do right now is stick with my physical therapy. I slowed down on it for a few weeks and really noticed the difference! It helps so much!

This journey has been a long and eventful one.

 

"Remember the feeling you get from a good run is far better than the feeling you get from sitting around wishing you were running."
-Sarah Condor 

6 months and 26 days POST-PAO!

I JOGGED FOR THE FIRST TIME!

Today during my PT appointment, I jogged on the treadmill! This is the first time I have ran since my initial diagnosis of the stress-fracture in my hip way back in August 2011!!!! Yay that's right! Marathon here I come! haha. Just kidding, not even close to that yet....

This is a huge milestone for me. I have been dreaming about running for over a year now. It just happens that I wore my "Marathon Training 101" t-shirt today to therapy. It was perfect. I literally was so happy I even got emotional over the fact that I was able to jog. It means that much to me. I felt like I was re-imagining this whole journey and realizing how far I have come.

Right now my PT is starting me off EXTREMELY careful and slow. We were doing one minute walk/one minute jog. We only did this for 10 minutes, so 5 minutes walking/5 minutes jogging. His goal is to get me to 10 minutes of continuous jogging. During the exercise I felt great. It kinda felt weird still having my leg partially numb but other than that it felt better than it did before surgery! Probably because I was running on a stress-fracture and multiple ganglion cysts! Who knew that running can be painless?!
The real test is going to be how I feel when I wake up tomorrow morning. Right now I feel a good sore after the whole workout today. I hope tomorrow I feel the same because that means we can up the time that I jog! 

Overall, I needed to post something about this! I wish I could of had my PT take a picture of me running for the first time...I might during the next appointment :) If I do, I'll be sure to post it on here!

Let's just say this makes me SOOOO happy! I have had a really hard year, with so many things happening that I can't control. Now, I finally feel in control. It's an amazing feeling!

Invisible Disability Awareness Week

So I missed Invisible Disability Awareness Week (Sept 8-14), however, I wanted to still post this....

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Congenital Hip Dysplasia and Acetabular Labral Tear
2. I was diagnosed with it in the year: December 2011
3. But I had symptoms since: I was 11 or 12. It's been about 10 years since the symptoms first started. I went to the doctor then and they acted as if I was making it up. The doctor would not believe me that I wasn't sexually active. He kept asking over and over and wouldn't let it go. I think it was because he couldn't think of any other reason why I had so much pain in my hip. He was very rude about it and I never went to him again.
4. The biggest adjustment I’ve had to make is: constantly thinking about what is good for my hip and coming to terms that I might never be able to complete the full marathon.
5. Most people assume: that I am cured. The truth is, I will have this the rest of my life. I do not have a normal hip and never will.
6. The hardest part about mornings are: not being able to get up and go for a run
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: elevators...they are the only way i can get around campus without hurting the next day
9. The hardest part about nights are: getting comfortable. I have to make my hip comfortable and now make my shoulder comfortable too (due to my rotator cuff tendinitis)
10. Each day I take ALOT of pills & vitamins.
11. Regarding alternative treatments I: think many work, you just have to find the best one for you
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I can hide it better when I don't want to think about it.
13. Regarding working and career: It is really a burden since I will be working in the healthcare field where I could potentially have to lift, walk and be on my feet a lot.
14. People would be surprised to know:That I ran 15 miles on a stress fracture, multiple ganglion cysts and a dysplastic hip.
15. The hardest thing to accept about my new reality has been: that my hip will never be "normal"
16. Something I never thought I could do with my illness that I did was: walk a 5K 4 months after surgery
17. The commercials about my illness:there are none. There definitely needs to be more awareness of hip dysplasia due to the doctors not even knowing what was wrong with me for so many years.
18. Something I really miss doing since I was diagnosed is: running. I miss it so much.
19. It was really hard to have to give up: completing a full marathon. Someday I might feel ok to complete the half. But a full marathon probably isn't the best thing for my hip.
20. A new hobby I have taken up since my diagnosis is: Crochet and reading. I never used to read. During my recovery I have read so many books! My brother even got me a Kindle!
21. If I could have one day of feeling normal again I would: Go for a looong run, go to cedar point, and jump up and down just because I can.
22. My illness has taught me: So much. It would be hard to summarize how much I have truly learned over the past year.
23. Want to know a secret? One thing people say that gets under my skin is:that I am too young for this! I am so f***ing tired of that statement! (excuse my french). You have no idea how often I hear this.
24. But I love it when people: give my the "VIP" treatment (opening doors, getting me stuff, etc).
25. My favorite motto, scripture, quote that gets me through tough times is:"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."
26. When someone is diagnosed I’d like to tell them: To join Hip Chicks support group. It may be a life-changing diagnosis but it isn't a terminal one.
27. Something that has surprised me about living with an illness is: that my family and friends are extremely supportive. I'm not surprised about this because I have such a caring and loving people surrounding me. However, I am very appreciative. Thanks everyone!
28. The nicest thing someone did for me when I wasn’t feeling well was: the list for this could go on and on...a)when people came over the apt to stay with me all day b) when Chris just held my hand and told me everything would be ok even though the pain was immobilizing c)when people took me out to do things even though I couldn't walk. I felt like such a burden to them but they didn't even care. d) the fact that everyone waited over 9 hours for me to come out of surgery e) there are just so many nice things....
29. I’m involved with Invisible Illness Week because: I want to spread awareness about hip dysplasia and other invisible illnesses. Just because you can't see that someone is hurting doesn't mean that they aren't hurting.
30. The fact that you read this list makes me feel: appreciated, loved, and proud to spread awareness

Invisible Injury, Invisible Pain

I've heard the term be used so many times about hip dysplasia. It's an "invisible injury". It's something that can't be seen by strangers. I am walking unassisted now but I still think about my hip with every step I take. The "VIP" treatment is gone. I finally "fit in" with the rest of society. I have been waiting for that for so long. However, as soon as I didn't need the cane anymore there was this idea that I was healed. That my hip was magically fixed and I could go about my life like nothing happened. That is not the case. I still have a long way to go in recovery. My left hip is still a lot weaker than my right. I'm in the point of recovery where I wish I was done. I noticed the whole process has affected many things in my life. It's like there is a part of my brain that is always focused on my hip and I don't have room to focus on anything else completely. I read a fellow hip blog the other day. He was two years out from his FAI surgery. He still favored his hip and said that it never really will be what it used to. When I first decided to have this surgery, I thought it was so great that this could be fixed and it would be like I have a new hip. Thinking that I wouldn't have to favor it anymore and I could live the rest of my life not worrying about it. After my last appointment with my surgeon, I realized this was not the case. He explained to me that I do not have a normal hip. I never will have a normal hip. I always have to think about that and try and take care of it the best I can. This was an eye opener for me. I didn't realize how much I was in denial about the hip dysplasia. I thought this surgery would erase it. It would be that magic fix I was waiting for. Coming to the realization that I would have to think about it the rest of my life was stressful, but now that I acknowledge that I know that I can deal with it.

Today I was walking in between classes and passed a person in the hall because I was walking faster than them. It made me feel so good that I was able to do this again. I wanted to look back and say that they walk slower than a girl that had a major hip surgery a few months ago! But I didn't. I am so happy on how much I have progressed over the past few months. I am happy that I am able to walk to class without everyone wondering why a 21 year old girl is using a cane. I'm glad that I don't have to explain to everyone in my class why I have the cane. However, I will admit it was nice having that support of everyone around me knowing the pain I was in. I'm glad to say that I do not have any more pain deep in my joint. Occasionally, I do get pain in random places but I can deal with that.

I have just been taking one day at a time. I am in an intense semester with some of the hardest classes I have ever taken and am in the point of recovery where I don't really know what is going to happen next. I just need to take a deep breathe and wait for this part to pass, because I know that after it's over, I am going to be in such a better place.

Doctor Appointment Update

I went to my surgeon today. He said that the only thing I really need to be worried about is that I am having some pain in the groin muscles. He thinks this could be from the nerves or from the muscles just being very tight. I'm hoping it's from the tight muscles because otherwise, it might not go away. I still am numb on my thigh which will probably take about 2 years to come back if it comes back at all. I also should not be squatting or doing any kind of squat movement because I am susceptible right now to tear my labrum again. This is very good to know since I have been doing this in PT a lot! It always hurt a little bit and now I know why.

The good thing is I CAN WEAR HEELS AGAIN!!!! You have no idea how happy this makes me. I have been drooling over all the heels in my closet and in the store because I want to wear them so bad! I'm so excited that I don't have to worry about that anymore!

Right now I still can't run. He said that I should focus on the elliptical and the treadmill. I can't do any road running for about a year...that means no running 5Ks anytime soon :(

I also have rotator cuff tendinitis in my shoulder due to the overuse of my upper extremities after surgery....ugh! It does seem to be getting better. I have added exercises for this with my physical therapist to get that back to normal. Not being able to rotate my shoulder= no swimming. Ugh, it sucks.

Right now I'm feel like I'm in a stage of recovery where everything is falling apart. My groin muscles hurt, my shoulder hurts, my back hurts, etc. A couple days ago I really was feeling discouraged because I felt like I have gone so far and just hit a wall in recovery. However, every day gets better and I just have to get through this part. Once my shoulder is healed up, I can start swimming again. I think once that goes away I will feel much better.

Also, I don't see the surgeon again until NEXT SUMMER!! It feels so far away! I can't wait until then because I'm guessing that is the appointment where he tells me I can run on the street again! Yay!

Here's a picture of my scar: 4 months and 18 days after PAO.

I WALKED A 5K!!!!!

I haven't written a post in awhile. I have been too busy progressing like crazy! Over the weekend I walked a 5K!!!! Yes, 3.1 miles! I felt so great that I was able to do this. I did not have pain during the entire thing! This hasn't happen is such a long time I forgot what it felt like!

In PT yesterday I upped my weight on almost every exercise and added some new ones. I did the elliptical for the first time and swam 30 laps in the pool! I'm so sore today but it feels so good to be able to be active again without being in pain and taking pain pills to fall asleep at night. I can't express enough how exciting this is for me. I haven't been using my cane but always keep it in my bag just in case. I still can't trust myself completely without it.

I feel like I am finally getting back to "normal". I feel like I have been stuck in this long dark tunnel. When I got diagnosed I saw a light appear at the end. Now, I feel like I am on the last leg of it and almost out into the sunlight. At this rate, I will be running again in no time!

Just keep swimming, just keep swimming...

Today after pool therapy my therapist took me over to the "cold water" pool. I swam laps in the pool for the first time since surgery!! I was so excited and I think my smile went all the way to my ears. I did one flip turn and was ok swimming freestyle, breast stroke, and back stroke! I didn't try butterfly because I need to be in way better shape to do that! haha. I can't wait until I can start working out in the pool again! Its going to be soon!!!!

On the road to recovery....

I am miles ahead of where I thought I would be at this point. Speaking of miles...I walked ONE MILE yesterday!!!! I walked to entire mile with a cane and actually felt pretty good! Today I had physical therapy and it kicked my butt! It felt so good to actually be able to kind of work out. My muscles are still really weak in my hip and I still have a long road in front of me. However, I am feeling so great!

Right now my goals are to be able to walk without a limp and without a cane. I don't think that it is too far away! 

NO MORE CRUTCHES!!!!

That's right! Today I got the OK from my PT that I do not need crutches unless I am going long distances! This may be the most exciting news I have had in 2 years!!!!! I have been on and off crutches for the past year and been constantly on them for the past 3 months. I feel like I have my independence back!! Today is such a huge milestone in my recovery process. However, like I have said before I really need to be careful and not do too much. This is the time where I can get ahead of myself and get injured.

On the other hand, last night I had the first dream where I wasn't on crutches (foreshadowing maybe?). I didn't need them at all and I was in a race where I was biking for 26 miles! And I finished! I felt so accomplished in this dream and had the support of all my family and friends there to cheer me on. I think this was a good sign. One day I will complete a Triathlon! It may not be for a few years but one day I WILL FINISH IT! That is my goal right now.

I can finally see the light at the end of this long, dark, dreary tunnel!

Learning to Walk Again...

I thought I would start out this post with a quote by Abraham Lincoln:

"I walk slowly, but I never walk backward."

I think this quote is pretty appropriate considering the fact that I went to the surgeon today and officially am FULL WEIGHT BEARING! Yeah that's right, I can walk!!!! Obviously, I am still using crutches and strengthening my muscles. However, this means that I am in the next stage of my recovery. The stage where I progress to lose my crutches and start on a cane! I can't wait! 

I think that I really need to be careful during this point in recovery because this is the time where I can push it too far and hurt myself. I need to be conscious of everything that is going on. 

Here some pictures of me taking my FIRST STEPS!!!

I'm putting weight on my leg for the first time! Yay!

 "He who would learn to fly one day must first learn to stand and walk and run and climb and dance; one cannot fly into flying." -Friedrich Nietzsche

Bye bye crutches! (just kidding...still need them for now)

My other hip chick also turned 15 years old this week! 

We celebrated my first steps and her 15th birthday together <3 

FUNDRAISER for HIP DYSPLASIA!!!

Last month was National Hip Awareness Month!!!!

Due to the time of my surgery and the intensity of my recovery, I wasn't able to organize anything. However, it's never to late to give money to charity! I decided to start a fundraiser for hip dysplasia awareness. One Hip World has done a great job at getting people together to raise money. So far they have raised $11,172.61!!!!!! Isn't that awesome!!! So now I would like to add to the pot!
ALL PROCEEDS WILL GO DIRECTLY TO THE INTERNATIONAL HIP DYSPLASIA INSTITUTE!

So please help me raise awareness as well as money for HIP DYSPLASIA!!!!

If you would like to donate please email me at myjourneythroughhipdysplasia@gmail.com or send your donation to:

The International Hip Dysplasia Institute
83 W. Columbia St.
Orlando, Florida 32806 




For those of you who know me personally, I will be selling the hip dysplasia awareness wristbands at my parent's garage sale for $1 donation! Please come by and help raise some money :)

Disability, deformity, problem? I call it an OPPORTUNITY!

Lately, I've been thinking a lot about what to consider my hip. A disability? A handicap? A deformity? A problem? All these don't seem right but they're hard not to think about.

DISABILITY/HANDICAP:
The first terms that comes to mind are disability and handicap. I have a disability/handicap pass. To be honest, I don't feel like I have a disability. Obviously during recovery I am going to have some disability. Using crutches makes it hard to do anything. Also, I've noticed people think just because I can't put weight on one leg I can't do anything for myself. Like I not only can't use my arms but also can't use my brain! It's frustrating. I also get self-conscious about using a wheelchair. I now have my own wheelchair (since most stores unfortunately do not provide them to their customers). I feel like because I have my own, more people look at me in a "disabled" way. You know, the "what's wrong with her?" kind of look. Or, even worse, the sympathy look. I do enjoy the "VIP" treatment from people helping open doors, offers to carry things, or helping me up and down stairs but I can't wait until I can blend in with the rest of society.

DEFORMITY:
Physically speaking, yes, I guess you can consider my hip dysplasia being a "deformity". My hip was not formed correctly at birth, thus it is a deformity. However, I hate thinking of it this way. The word deformity has such a negative connotation to it. You think of someone being deformed as being really ugly. I will be honest though, it crosses my mind every once and awhile. I feel broken at times. I know that no one is perfect but I feel that this just shows the imperfection more. Most of the time I try to ignore this part of hip dysplasia as it is hard to think about.

A PROBLEM:
This word may not be the first word that pops in my mind like disability but it is the most frequent. Going through this entire process has shown me the problems with many different things, not just my hip.  

1. Problem #1: It has shown me the problem with handicap accessible public areas and stores. You don't realize how difficult things can be until you have a wheelchair, crutches, and no hands available to do things. Store aisles are too small for wheelchairs, doors don't have buttons to open them, restrooms have papertowels/hand dryers/soap not easily accessed, and most stores don't even provide wheelchairs to their customers. For me, this is a short lived experience and thank god! I would hate having to deal with this stuff for more than a year. I feel so much sympathy for the people that deal with these problems their entire lives.  
2. Problem #2: The organization of hospitals. It is amazing how disorganized the healthcare community is. I am going into healthcare and have been dealing with this a long time but being on the client side of healthcare is completely different from the employee side. I am so glad I had this experience to show me what the patient is really going through. I never knew how little different departments talk. One says one thing, the other says the opposite! What is the patient suppose to think? No wonder people hate doctors. The constant hospital bills in the mail doesn't help either. Even though my insurance/ financial assistance pays for most of my bills they still send me one before the insurance even processes it. I am still getting bills for last year...
3. Problem #3 and most important: My hip. I have to be so careful right now. My bone is healing and I can't do anything wrong right now or I could seriously mess it up. I worry about sleeping on it wrong, slipping while crutching around, stepping on it without thinking, etc. The pain and discomfort also is not pleasant of course. I have actually gotten to the point where the pain isn't what bothers me most, its all the stuff I can't do on it. I know I shouldn't think about it but I can't help it at times. I can't drive, walk, run, bike, swim, play....the list goes on and on. I am proud of where I am in recovery and I feel very confident that I am doing better than they thought I would. However, I can't wait to start getting back to normal. I see someone run by in my apartment complex and I just think to myself how much I really want to get out there and join them!

But what it all comes down to is that the good in the situation out weighs the bad! There is no disability in the fact that I am learning and having experiences that no one in my OT field will have. The ones that are disabled are the ones without this type of experience.  Also, I may have had a "deformity" in my hip since birth, but I have accomplished so much on that hip. I have been on cross country, swim team, swing danced, walked around the entire city of New York and Chicago (with a cyst), trained for a marathon (on a stress fracture and multiple cysts), and I plan to do so much more! And as for calling it a problem...I call it an OPPORTUNITY! An opportunity to learn, to experience, to educate others, and to grow. One of my favorite quotes (as seen in the photo above) is that "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." I feel like this is such a good quote for my situation.

Feeling coming back

Yesterday started the new wave of pain. It feels like a sin curve. Up and down, up and down. It has been like this for the past year. Obviously right after surgery was the peak. The pain has been going down since then. Until, yesterday it went right back up. I have been numb in part of my hip since surgery. I couldn't feel anything on certain parts of my skin and I was starting to get that feeling back the other day. The nurse told me that the nerves had to rebuild themselves. Well, I found out that it wasn't only my skin that was numb. I'm gaining feeling back in my pelvic bone as well. It HURTS! Unfortunately, I had to start taking my pain meds again. I know that this is a good sign though because everything is healing. Regaining feeling is a good thing, I just wish it wasn't regaining pain. I'll work through it. This experience is definitely a difficult one. One of the other hip chicks described it perfectly. This surgery is "not one for the weak". It tests all your emotional and physical limits. After this experience is over, I know that I am going to have gained so much strength not only in my hip but also emotionally.