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.