Sunday, October 27, 2013

Hip crutches

 My mobi-legs crutches are awesome and super comfy, but they look so lame. So, I made them a little more hip! I wrapped the metal with painters tape and then hot-glued the fabric on. Then I made some furry cozies and put snaps on them to keep them in place. I plan to do the same to my walker.

Had all my pre-op stuff done, blood draws, EKG, nose swab. My EKG was abnormal so my primary doctor made me do a stress-test for my heart. I had to go to a cardiac clinic. Since I can't run on a treadmill (he told me you have to run fast, which isn't true) I had to get a chemical stress test. This involves an IV, injection of isotopes and then a chemical that makes your heart beat fast and feels like you are running when you are just sitting still. Then you get your heart scanned by an MRI like machine.

This took all day. I had my first IV ever, I couldn't eat or drink until 1pm until I got the isotope injected. I was afraid of the chemical that makes your heart beat fast.
The nuclear med tech kept telling me you will feel gnarly at first. It wasn't that bad. They made me walk on the treadmill anyway because it feels better. It felt kind of weird, you get a little out of breath, but I wouldn't say its gnarly. It only last 5 minutes.

So my heart reading is abnormal, but it's normal enough for surgery. The cardiologist will call me soon and clear me for surgery. I feel relieved that my heart is ok. My doctor told me I had a narrow artery, which isn't true!

So now I'm waiting for my Nov. 13th RPAO. My mom will be driving me 3 hours up to Seattle. We plan to stay at an extended stay motel. After I get out of the hospital I will stay in Seattle until my first post-op appt. and then go home.

My boyfriend is going to visit me in the hospital, but he has to be home to take care of our kitty. Plus, I want him to have his own space before he has to take care of me full time.

I feel excited and calm and creative. Im sure the days before surgery right up til, will feel different. But for the moment I feel good. I am looking to speak with a nutritionist soon. Being vegan I want to have a meal plan that helps me get enough protein and whatever else I need to heal. I already eat very healthy, but after surgery you have to double the amount of certain nutrients. I have a cousin who lives in Seattle who is vegan too and she may bring me vegan drinks and shakes at the hospital. Very nice.

Wednesday, October 9, 2013

missing hips

I used to identify and describe myself as things I can no longer do. And this is strange! Since I was 18 I learned to become a dancer and a drummer. I went to college in northern Cali in a small town. I spent most of my time at the beach or in the woods. We learned how to entertain ourselves. We performed for one another. I was a part of a community. I became a performer.

Fire dancing was the big thing. I think because our beaches gave us the space and safety to learn. We also had fire poi classes at HSU. We were allowed to perform in public for monthly art walks and this exposed us to many people who hired us for weddings.

I learned how my body worked and moved. For me fire was an inner power. You couldn't doubt yourself much because if you did, you got burned. I was able to get over my body issues and social phobias through dancing. I was a dancer.
Drumming was extra special for me. I did a lot of my drumming alone. It was significant because I was always a super quiet and shy kind of person. Drumming allowed me to find my voice. I lived with an older room mate who pretty much gave me a kit so he could play bass with someone. I never had an instrument growing up and this thing was very intimidating. He showed me the basics and I fell in love. I learned quickly. I have excellent tempo I never knew I had. I played everyday for years. When I moved out into my own little place, a friend gave me this gold japanese kit. I had my own drum room where I could be loud and try different things. I started to play in bands. I learned how to listen to other musicians and their instruments. But mostly, I played for myself.

I used my rt. hip joint a lot! My kick pedal was stiff and I really had to slam my leg down to hit the drum. I remember when I started to feel my first hip pain. My thigh used to swell. I played from 2003 to 2011 until I just couldn't play anymore. Actually I didn't even realize it was my hip joint. Most of the pain and stiffness was in my thigh. I just didn't feel good anymore.

 I bought my Pearl kit in 2010. It had a lot more to it. I loved it, but I remember feeling like I was losing my energy somehow. It hurt to play. I ended up selling it after a year. I was given an electric drum kit as a graduation gift. It's great because the sensitivity lets me not have to play or kick as hard. It's folded up in the corner of my room until I can play it in my post-dysplastic future.

I feel very silenced by my hip dysplasia. I miss myself. I've lost my connection with my friends. I am tired. Most days I can walk around my apartment, but I lay in bed a lot. I don't know why I can't sit anymore. It's never been explained to me. My joint pain got so bad last November that sitting created such pain and nausea. I havn't been able to sit in a chair since x-mas. I can't believe how long it's been. Sometimes I try and sit up in bed a few minutes and it feels so so good to just sit on my sit bones, but the pain and nausea always comes. I can't even bend my rt. knee without the same reaction.

Please please please let the PAO fix this. If I could sit up after surgery and be ok, what a miracle. If I could actually sit in a wheel chair, wow.

I know I will become a dancer and a drummer again someday. I'm always thinking about it. Dreaming about it. Lately in my dreams when I find myself spinning fire or playing my kit, the pain seeps through anyway and I realize how disabled I am. I can't even walk in my dreams without limping. Pain is saturating.

My hip describes me. It gives me boundaries and shows me different ways of being. Besides the pain and not being able to sit or do much of anything, I have found a deep well within myself. I have patience. I feel more emotions. I am more appreciative and insightful. I live life slower. I enjoy different activities. I love embroidery and snail mail. I love David more and more. I am saving my energy for when I am healed. I have become a more sensitive compassionate person.



Saturday, October 5, 2013

My surgery date!

I finally got my RPAO surgery date with Dr. Downer. It will be Nov 13th 2013. Right around the corner. Ive been so busy will all these ridiculous phone calls I never had a chance to really think about getting this surgery. I feel a lot of relief. I thought I might have to wait until next year to try a new insurance that may or not cover it. I just can't wait any more. I'm just too disabled from this. I can barely walk now. My pain is constant.

Oh man, my primary doctor just wasn't cutting it. He wasn't helping me at all. The only thing he tells me is that he can't prescribe me any pain meds or anxiety meds because of addiction, blah blah. I was having such trouble trying to get a consult with Dr. Mayo. It was a nightmare! The referral coordinator kept sending my medical stuff back to me and kept telling me that this surgery will cost 250,000. My primary said he would talk to Mayo directly and get things sorted and he never did. After my 4th visit and no help from him I got a new primary.

My new primary knows all about what surgeries entail and will help with my blood work and communication and post-op stuff. He prescribed me Valium thank god! I havn't slept well in months and keep having PAO nightmares.

Ok, I want to post how much this surgery is going to cost! I have to pay out of pocket. My state insurance will not pay for this surgery, I tried for 6 months, no luck. I am very fortunate that my family is willing to help me financially. Actually, my grandpa recently died, he was an amazing orthopedic surgeon, he suffered a stroke in 2005 and then another stroke killed him. My grandpa's money will be paying for my surgery. My grandma says he would have wanted to help me.

Cost of surgery. I am getting it done at Swedish Ballard Hospital in Seattle. An amazing guy who helps patients with costs and estimates has been helping me get it all in order. If you pay up front before the surgery you get 50% off, which we all know is inflated anyway.

The PAO surgery is originally 38,000 for 2 days in the hospital, this does not include anesthesia. 50% off is 19,000. The surgeons fee is 5200 after 20% off. I will probably stay in the hospital longer than 2 days so will have to get on a payment plan. Paying after surgery is also a 50% discount if payed up front.

After this was all sorted and we are getting ready to pay this huge amount of money, I got a call from Dr. Mayo's office because of my complaint of being completely ignored. I talked to the office manager. She tells me that for out of pocket this surgery, 5-7 days will cost over 200,000 dollars! I mean, really, how full of shit is that? I know this because my aunt is an insurance nurse and she has helped me figure out what things should cost. My mom was visiting me, she is a medical person, very knowledgeable in hospital stuff and I let her talk to this lady. In the end this lady admitted she really doesn't know how much things cost. We told her to mail us a itemized list of costs and she really started to back pedal and get nervous. I mean, do people really pay this amount?

In fact, there are others who have struggled with Mayo's office too, I am not the only one and stating this ungodly cost, I think, is a way to scare people away. It makes me feel so sad and upset if people like me want to see this amazing surgeon and they encounter these issues. Luckily I did tons of research and found Dr. Downer.

Here is what I love about Dr. Downer. I did not need a referral, being an out of state, out of pocket person. I got a consult right away. He was very confident and made me feel I was making the right decision. I was able to get financial advice and excellent communication from the hospital. They mailed me an exact cost.  I am able to ask questions and Dr. Downer has called me personally to answer them. I made my surgery appt and only have to wait a month, how reasonable! I am so blown away. It's the first time anything has flowed for me. I have been fighting against the grain since the beginning in Nov of last year when I was sort of diagnosed and saw 5 surgeons and fought through insurance denials and researched PAO and arthroscopies. My whole blog so far has been all about these struggles, how frustrating and boring!

My only concern at this point is that Downer is not going to repair my torn labrum. This scared me at first. I talked to a PA, who told me this PAO should solve all my problems. Dr. Downer called me and talked about why he no longer goes inside the joint during a PAO. He said he used to and those patients had a harder time with post-op pain and other issues. Patients who have a PAO without their labrum being fixed do not have as many problems. I guess the pain goes away because the labrum is in its proper place. This has been hard to swallow because I have never read this. Many "hipwomen" get their labrums fixed. Dr. Mayo fixes labrums during open hip surgery. So, I just have to trust Dr. Downer and take his word for it.

I just bought crutches! I ended up getting Mobi-legs. They are more ergonomical, light weight and feel much better than regular crutches. I had gotten regular crutches from walgreens and after a day of practice I knew it would be way too uncomfortable. They were too cheaply made as well. I went to a medical supply and I got a great deal on Mobi-legs because they didn't sell for awhile. I payed $35 for $80 crutches. I will be practicing with them. I have 40 stairs up to my apartment! Meaning, when I get home post-op I will not be doing stairs, I will be staying in the apt for as long as I need.

My aunt and uncle might let my mom and I borrow their huge trailer to stay in before and after my hospital stay. I think you can get hooked up in the hospital parking lot That way we don-t have to do motels. And I can recover before making a 3 hr. trip back to Portland.

This month is going to be interesting. My anxiety is already high. I plan to start doing mandala art. I really need to focus on calming myself and eating nutritious food everyday. I am doing a little home PT. I need to bulk my arms up, I am a weak mess!
I embroidered a whale square for my friend's alphabet baby quilt.