Wednesday, December 25, 2013

6 weeks post-op

6 weeks post-op today on Christmas! It has been difficult staying in bed 6 weeks straight. I feel restless. I havn't left the apt yet due to the 35 stairs down to the outside, which I'm not willing to risk yet. My op leg still turns red and blotchy when I stand up and walk. I see my surgeon Jan 9th and after that I will be up and about more, hopefully doing PT soon.

The big breakthrough for me was ordering a shower chair and for the first time in over a year I actually sat. I sat on the chair under the shower for maybe 10 minutes and I can tell the pre-op pain I felt before is gone, or maybe just dormant. So im pretty happy. My joint has been very sore lately and my psoas tendon gets tight and irritable. I think it's period related. I was 15 days late on my period and now that Im on it, my pain level is much higher.

Im just really looking forward to PT and moving forward. My thigh muscles are very atrophied and weak. I still have not been able to turn my op leg in frog leg position, I think the PAO procedure takes place in that frog leg position joint space. But my ultimate goal with this is to sit pain free, cross my legs, swim, yoga, of course walking normally.

I know many other PAO people are much more active than me, but my surgeon was very firm about 90% of these 6 weeks being in bed. I can tell my hip bones are not as clunky as they were. I have more sensation and muscle strength. I can sleep on my op side. I am not taking any pain meds, just mobic. My scar is healed. It's red and smooth and looks pretty good.

My next goal is to get to the gym and float in the pool. Actually once I can get outside my apt. building, life will seem exciting! I feel a little trapped here. Other than my hip, I'm having a wonderful time with David. Xmas was great. I was gifted some yoga stuff like a matt and foam blocks, a DVD on yoga for hips. Oh, to do yoga again, it seems so far away...

Time is slow, but I am taking this time to really focus on time consuming things like:

1. re-learning algebra! I got this algebra book called "forgotten algebra" and am doing all the math problems every night to stimulate my brain. I'm also doing one of those connect the dot books for adults. Some pages have over 500 dots!

2. Learning beginning Spanish. David is hooking up rosetta stone and we will do a chapter a night. He already is pretty fluent, so can teach me as well.

3. Working on embroidery when I can. Learning new stitches is exciting for me.

4. Finishing the book, "the golden compass."

I'm all up to date on insurance stuff for next year. I have state insurance, but will be getting more coverage like PT, acupuncture, dental, vision, which is very exciting. Who knows what kind of appts I will be able to get, Im sure there will be waiting lists for everything!

Friday, December 13, 2013

4 weeks post op

4 weeks! My pain has become more tolerable. When I think about the pre-op pain, it makes me sad and angry. I suffered. I suffered and did not get the help that I needed for a whole year. Im still not too active and my surgeon's PA told me to not do any PT stuff until my 6 week post op appt. I can lift my foot better when "walking." I use thewalker in my apt, but take the crutches out in the hallway so I have more freedom of movement.

My scar is healing nicely. I still do not shower with a shower chair. I wash myself with a washcloth in bed and my bf helps me. I can sit maybe 5 minutes, but I can feel the surgical pain and don't want to push myself.

I do not take any more pain medication. I think I can stop the aspirin. I will continue the mobic, but eventually I will take turmeric, an anti-inflammatory that I find much more effective.

I have to see Dr. Downer Jan 9th so we have to rent a car and drive 3 hrs to Seattle, stay in a motel a couple days. This is expensive. Im trying to get SSI, got my first denial letter which was assessed before I even had surgery. Im sure everyone gets denied. I will keep fighting. The letter said that despite my condition I could still potentially work, ha! I have to be disabled 12 months, which I have been, surgery accounts for 3-4 months for that, so I will have to prove pre-surgery disability, which not one of my primary doctors have written about of course, only that I need a PAO.

Im lucky my family is helping me with rent/bills. Seriously, there are probably people who have this condition, can't get medical attention, can't afford surgery and become permanently disabled, homeless? I recognize that I am privileged in so many ways and I still struggled to get this surgery, it took over a year and all my mental/emotional energy!

My 5th week I hope to accomplish sitting on a shower chair, use crutches more, that's probably enough for now. I know many people who tell me that by 5-6 weeks they are up and about, doing PT and being more active than I am. But I find they are in much more pain. My surgeon says rest is the best way to heal bone. This is hard because my muscles are atrophying and shrinking, but i guess future PT will restore my strength.

I am getting back into embroidery and made this snowman as an xmas present.

Sunday, December 8, 2013

3 weeks post-op

A week really does make a difference. I can tell my body is healing. I'm more comfortable and am sleeping well. I stopped taking pain meds (Norco) and just take aspirin and mobic. I stay in bed most of the time. I talked to Dr. Downer's PA and asked questions about what I should be doing. They said don't do anything until I see them in January. So, I'm not doing any PT in bed, just getting up once an hour and hobbling to the bathroom with my walker. My op leg still turns red and blotchy, this is normal. It feels a little numb and itchy. I don't even attempt to lift my leg because I know the muscle is detached and weak. I feel mentally better too. I was getting headaches from the meds and now I feel more alert and can focus better.

Really I think having good company makes all the difference. David takes good care of me without complaint, he even makes it fun. He is feeding me well, sponge bathes me, washes my hair, makes me laugh, rents me movies. We are watching some really good art house movies. "Wings of desire" was amazing! Lots of German movies.

I wonder how I will feel in 3 months, if PT will help me become stronger and become pain free. Before surgery, I could not sit at al due to pain and my brain screaming at me that something is wrong. I know sitting after a PAO can be tricky for about 5 weeks, maybe longer. I want to sit comfortably and cross my legs when I want and bend my knees for extended periods of time. This is what I dream of.

Let's see, what's new with my body...
I can get out of bed by myself by hooking my op leg with my elbow and sitting up.
I can push my foot away from me, but not towards.
I can sleep on my op side as long as I have a pillow between my knees.
I can move my op leg in front of me when I "walk."
The intense thigh tingles have gone away and there is less numbness.

My goals for next week:

Get a shower chair and attempt sitting. I still cannot sit without pain, even in a recliner.
Get a shower hose thing so I can wash my hair better.
I want to put a basket on my walker so I can carry things with me.
Attempt using crutches down our hallway.

Creative goals:

Make catnip felt toys for kitty, ceecee.
Take a nice xmas photo by our tree with me on crutches.
Start reading a novel

David usually always goes to NJ for xmas, but this year he is staying here and we are celebrating our own little xmas together. Today was the first day I did anything crafty since before surgery and it felt great! I can sit up a little more than last week. Reading has been hard, it makes my eyes heavy, I can read for about 10 minutes at a time,  I think I am very exhausted...

embroidered pao felt ornament. Processing trauma through crafting.

Saturday, November 30, 2013

2 week post op

phew! everything has been happening kind of fast and Im already 2 weeks post rpao. At the moment, the pain medication makes my vision blurry and my eyes hurt so It's hard to look at a computer.

I was in the hospital 4 days. My mom stayed with me the whole time and my boyfriend visited me. We had to drive from Porltland to Seattle and were pretty unfamiliar with Seattle, but everything worked out ok.

Hospital experience at Seattle Ballard: I had my surgery early and had to be there 6am for a 9am surgery. I was very nervous and they let me have an adivan. I met the anesthesiologist who was super nice and supportive. I was wheeled into the surgery room and they did a spinal. I think they pumped some sedatives into my IV. I remember the spinal feeling weird and my legs were going numb. I woke up in recovery and it was all a blur of faces. Surgery went well and was only 2 hrs! I just had a rpao, they didn't repair my labrum or open up the socket.

My incision is 6 inches, sightly s shaped. It's covered with steri-strips that will fall off eventually, I wonder how long that will be. I still keep a bandage over it. It's still very sensitive to the touch.

The next 3 days, I slept a lot. They gave me oxycodone which made me so dizzy I couldn't do anything. I barely ate, I just drank tons of water. PT tried to get me to sit and stand on day 2, but I was way too dizzy. Day 3 I got up and walked with my walker down the hall a little. I felt so sick and felt faint, so they wheel chaired me back to my room. My mom finally got the nurses to switch my meds to Norco and I felt so much better!! I didn't really get to do any PT. I got to leave the evening of day 4. My mom drove me an extended stay motel, we stayed 5 days.

The only thing that really hurt was my stomach muscles near my rt. hip joint. They re-attached an abductor muscle and I felt very swollen and sore. My thigh felt very numb and when I stood up my leg got very tingly. I pretty much slept a lot. I had major potty problems. I knew constipation would be a problem, that's what everyone says. It is a major problem. Sitting is painful. We brought a high-boy. I have to drink lots of fiber water, take stool softeners, even ex-lax. It's still pretty terrible. The meds really slow things down.

We drove home 9 days post-op.  I had my first post-op appt right before we drove home, met the PA. I was told to do nothing for 6 weeks. When I see them for at 7 weeks, I will be able to put 25% weight on my op leg. I dunno when PT starts...

I have a twin size memory foam mattress that we stuffed into the front seat of the car so it was comfortable for me to lay back and drive 3 hrs back to Portland. We stopped at a rest stop and used the handi-capped parking. Even using my walker, I really struggled to the bathroom. Everyone was staring at me, I felt sick and very weak.

At home, with my boyfriend, who is amazing, we rented an electric bed for me and I sleep in the living room. Im so happy I got this bed. I can't sit up by myself yet and I can't move my op leg very well. David has to lift my leg and guide it to the floor if I want to get up. I use the walker to get to the bathroom. Im getting more sensation in my leg. The only thing that happens that disturbs me is when I am "standing" and my op leg gets very red and blotchy and itchy. So I am still wearing my compression socks.

week 2 updates:
I can roll to my non-op side by myself at night if I have a pillow between my knees. I am taking less pain medication. My pain level is pretty low if I am laying in bed. Plus the meds make my eyes very tired. My boyfriend still has to guide my leg to the floor, but I think in a week I will be able to do it myself.

I don't have a shower chair yet and I still can't sit in a char so my bf gives me sponge baths and washed my hair in the sink. He cooks for me and dresses me, pretty much everything. He is off work for a while so it works out, thank god! I dunno what I would do without him. He makes everything tolerable.

We just got wii mario kart so that is what I am doing.

Tuesday, November 12, 2013

my RPAO adventure begins!

My PAO surgery with Dr. Downer is tomorrow Nov. 13th! I am in Seattle with my mom and boyfriend David. I saw the pre-op nurse yesterday at swedish ballard hospital. I will be getting a spinal with sedation. I was worried about anesthesia. I thought everyone got general. My hospital does not like GA for these PAOs, so maybe everyone gets a spinal.

We have been in an extended stay motel for a couple days, checking out the handicapped room. After the hospital, I plan to stay in the motel until I feel I cam travel 3 hrs back to Portland. My mama is going to stay in the hospital room with me. David will go back home the day after my surgery. He's going to take care of our kitty and I wanted him to have some alone time before I am back home. Once home, he will take over as caregiver.

I feel ok today, my hip hurts like it always does. We are going to find a nice park to walk in. I can't imagine not being able to walk for so long! I feel worried and a little anxious. I know tonight will be hard to sleep. I will find out my surgery time sometime today. I am trying to be super positive. I have waited a year for this surgery, I have fought insurance to try and get this covered, which it isn't. I had to figure out finances. My family raised money for me. I have seen 4 ortho surgeons before dr. downer who didn't know what to do with me or thought I even needed a PAO. I researched and read and educated my friends and family. This surgical decision was not an intuitive one. It seems like a crazy experimental surgery. Only when I joined a few PAO online groups did it make any sense to me.

Im glad it's cold and rainy and I will recover over the winter. I get to sleep a lot and watch movies with David. I am lucky to have a man like him. He is an amazing cook, he is very clean, organized and motivated. He is taking time off work to care for me for as long as I need. He is my best friend and after 5 yrs together I know this will bring us closer.

I will try and update as soon as I am able. I don't know what to expect just yet. I hope I have wonderful healing dreams.

embroidered PAO

Friday, November 1, 2013


 Finished the walker. Wrapped with painters tape and then I hot-glue strips of fabric over that. I plan to add a bicycle bell too.

Halloween is my fav holiday, I usually spend a lot of time on a costume, but this year I transferred that energy into decorating my medical equipment.

Now starts the countdown to surgery for me. In 10 days I will be headed up to Seattle for my Nov. 13th date. My mom, bf and I are staying at an extended stay to see if that's where I want to convalesce after the hospital. I plan to stay there until my first Post-op appt, unless I feel amazing and can travel 3 hours back down and then up again from Portland.

 To keep myself from freaking out in these coming days, I have several art projects to start and finish. I'm the kind of person that has to finish things or it drives me crazy. And I know after surgery I'm not going to have any energy to create much.

I've done lots of embroidery this year. I have hoop art all over my walls. I just started doing pastels and mandalas. It's messy and I need that right now. For so long I have been struggling to control everything, the doctor appts, the phone calls, medication, hip pain, surgery, payments, insurance, etc. My nerves are shot. So now as I succumb to other people taking over the control for me, I am allowing myself to get messy in my artistic expressions.

Halloween day I felt kind of sad. All my friends are going to amazing warehouse dance parties. No one called me. So I made Frankie. He's made with a halloween stitch pattern sock. It took all evening to finish and I like him.

I have big plans for next year.
CeeCee was a little unsure of him.

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.

Sunday, September 15, 2013

September Seattle trip

Just got back from my Seattle trip, my first time there. David and I rented a car and decided to make it a nice trip, visit parks, go to coffee shops. The drive is about 3 hrs from Portland. I was nervous about being in the car that long. After about 20 min. I could feel my hip and leg tense up and cramp. When we got there I was in so much pain. We stayed at motel 6, of course the hot tub was out of order. I didn't sleep very well.

 I met with Dr. Downer for a consult. I brought my MRI and Xrays. They took 2 xrays there at the Orthopedic Center. He came in and told me straight up I have dysplasia in both hips, but my right one, the painful one is worse. I need a PAO. All my pain is due to the dysplasia. I do not have FAI. He explained the surgery to me, but I felt a little restless, I know all about PAO surgeries by now. I wanted to know more about my hips. He says my ce degree is 17. He told me he usually does all kinds of tests, but my dysplasia is so obvious so he didn't make me stand in different ways. He talked to me for maybe 15 min. He was in a rush. He said any questions I have I can talk to his PA's. I told him all about Dr. Mayo's office and the estimate that was quoted (250,000) He said that it is not that much, maybe 1/10th of that cost, so I felt a lot of relief.

Even though he was not very detailed with me, I liked his confidence and assurance that I really do need a PAO. He does arthroscopies too and said it would just fail. I am choosing to trust in him. I have seen 4 previous ortho surgeons and they all have said different things, very wishy-washy. I talked to the scheduler and she told me I could get surgery scheduled this November. What I liked about Dr. Downer's office so far is that they aren't as concerned about the money and gave me the info about how to get estimates and financial aid. I feel a huge relief I do not have to hunt for ortho surgeons anymore!

I visited the Swedish Ballard Hospital where Dr. Downer does PAO's. They could not help me with an estimate, I have to call the special number and recite the surgical codes. BTW, a PAO is an unlisted procedure, so there is another code that is used that is similar to get an estimate of costs. They gave me an application for financial aid. Although I am an Oregonian I do not know if I can qualify, but I will find out soon.

David and I went to Gasworks park, such an amazing view of Seattle and the old gasworks looked so sculptural. We went to the Pike Place Market. They had a really cool anarchist bookstore, Leftbank books. We walked a little on the boardwalk. It was like going on a really nice date. We checked out the University neighborhood. They have lots of vegan cafe's and amazing food. I celebrated my 29th bday.

My hip was just killing me. We left on the third day and I really suffered in the car. Now that we are back in Portland I have a bad cold, of course. It's weird because I am such a healthy person and am never sick, but lately I am just a mess. There is a lot of stress. I am stressed about money. I applied for SSI 6 months ago, I will have to update them about this surgery.

David leaves in one week to work in Cali for 2 months. I will have to take the bus and grocery shop by myself, carry stuff in my backpack. Dr. Downer told me that if PT is hurting me then do not do PT, so I am quitting. I will do the exercises that I can, but the hip joint stuff is just aggravating everything.

This next week I am going to
1. get an estimate of a PAO surgery
2. Try and schedule a surgery for November
3. Write a letter to my grandma and ask for financial help
4. Send out the financial aid app
5. see a pain specialist
6. figure out what kind of crutches I should practice on

Yesterday I went to our local craft fair to walk a little bit and found myself talking to a doctor lady with a healthcare booth. I briefly told her my whole story and how hard I have been fighting to get treatment. Having state insurance really complicates things, she told me I should have no problem getting this surgery covered, isn't my primary advocating for me? Nope. I told her I have to do this all on my own and pay out of pocket. I could tell she felt so upset for me, It really kind of ruined my day.

I can tell my friends are really uncomfortable with the whole thing. I think they are waiting for me to just get this surgery over with and maybe visit me as I am recovering. Also I don't think they understand how long the recovery actually is. Im trying not to let things eat at me. I have all sorts of art projects planned. I have been swapping art with other artists through the mail and it has been so fulfilling. Sometimes connecting with strangers is just more meaningful and satisfying when life gets crazy.

Sunday, September 8, 2013

Dysplastic Butterfly

 I finished my hand embroidered piece. I used a lot of sparkly thread which doesn't photograph too well. I wanted to make something positive to look at while in bed. My hip is hurting a lot now, everyday, I'm a mess. But I have hope and I have gained patience. I plan to make more "hip" art, but depicting pain and sorrow, I am very interested in art therapy. I plan to print out a bunch of anatomical photos and try to draw where my pain is coming from exactly so I can show Dr. D when I see him next week.
I have been feeling such anxiety and disappointment. No one is listening to me.
It's my 29th birthday on the 10th. My bf is coming back home after a NJ visit. I miss him so much. We are going up to Seattle for my OS appt. but we are making a nice road trip out of it. I have never been there before. I want to check out the parks and drink coffee.
David is leaving to work in Cali a couple of months. I will be on my own. Yesterday I took the bus (painful) to the grocery store and got a backpack full of groceries. I don't take my cane anymore, it's too awkward and when I'm alone, I feel like my cane is an advertisement for vulnerability (harassment). I dunno, carrying weight on my back is not good for my hip. My steroid injection has worn off. I am waiting to hear back from my primary to go to pain management, their waiting lists are long too! I feel afraid. There is a looming fear that I won't be getting the help that I need. All I want is to go back to work, my old job, from 9 months ago, I don't see an end in sight. I have to prepare myself to wait another 6 months before I can even think about pao surgery. I doubt my endurance. Art is all I have. And books. And my kitty.

Sunday, September 1, 2013

A snail's pace

The month of August seemed to last forever! A lot has happened and nothing has happened simultaneously. Sometimes I just want to forget about my hip and stop trying to pursue this surgery. But I know if I stop, nothing will progress, no one is going to call me up and tell me what to do.

I don't really post much on FB to my friends about what I am going through, but today I feel so isolated I gained enough courage to post this:

"There is something very strange and difficult in being a young person with an injury/chronic pain. In a way, I have become very self-reliant, reflective, creative and accepting of these challenging circumstances. But I am suffering in isolation of my limitations. It's like I am on a path that strays so far off from any of my friends. And of course I am grateful of all the love and support. Some things you just have to go through alone. Even though I know I have been changing and growing, I have many losses I have to cope with. I miss my youthfulness, activeness, dancing, drumming, my social life, my friends. I hope to come out of this empowered and strong and fully healed."

My boyfriend left today to visit family in NJ for a week. When he comes back we are driving up to see Dr. Downer in Seattle for a consultation. I really just want better information on my diagnoses of dysplasia, FAI, chronic pain. I want a pao surgeon to actually tell me I need a pao, not just a hip OS.

I really wanted to get a consult with Dr. Mayo and I tried so hard to send him all my info, my history even a cover letter. But his referral coordinator will not let me pass. Dr. Mayo has not reviewed my case because this lady keeps sending it all back saying he won't be able to help me. I will be paying out of pocket, but for some reason they will not give me an appt. Dr. Dower was very easy to get an appt. I can pay out of pocket, no big deal. My primary doctor is going to talk to Dr.Mayo directly, even he was concerned how I've been treated and no one will tell me what the criteria for a consult is. It's been over a week and he hasn't heard from Mayo yet.

I know my insurance will not cover this surgery. I really thought that if you paid out of pocket you could do some sort of payment plan. Only their payment plan costs half up front of the total surgery (quoted 248,000). I really thought a 20,000 down payment would be reasonable. (my family was going to raise this for me).

At this point, I know I will not get surgery this year, which is so devastating because I am in such pain and experience such limitations. I am going to have to wait until I can apply for a better insurance through the obama plan, however that works. I am trying really hard to accept this fate.

I have been doing PT with mixed results. I can do my exercises, but then I have to skip some days when my pain is too high. My steroid injection is wearing off. I am planning to see a pain specialist soon to help me figure out why and where my pain is coming from. The pain I feel when I try and sit 90 degrees is very different than the usual pain I feel from having a sore,tight,dysplastic/labral tear hip. I feel a lot of my pain coming from my iliopsoas down to my rt. ankle. I tried sitting through a movie at the theater again and in 10 min, the pain was so strong and my ribs and ankle felt so irritated.

I do not take any pain meds because my primary will not prescribe them to me. I really don't know why, he understands I have high pain and suffer. I am doing all the alternatives. PT, stretching, ice, baths, relaxation, rest, using pillows, using my cane, injections, anti-inflammation meds, creating art, journaling, etc. I tried a deep tissue massage and it about killed me, I really can't afford it either.

This week I made
 an embroidered pumpkin for a swap.

 an embroidered patch for my jacket.

Wednesday, August 7, 2013

pre-op PT

I decided to pay for some PT out of  pocket, it's right up the street from me and a 5 min. bus ride is do-able. I really liked this PT. He spent a lot of time measuring and testing muscles. He knows how to work with a labral tear. He noticed I have slight scoliosis and how I walk with my shoulders and hips in different directions. He listened to all my symptoms and shed some light on why things hurt. I havn't been able to sit, but particularly in a frog leg position. He says it makes sense because it stresses the labrum. He explained details about FAI. I gained some trust in him.

Im glad I am starting PT because my body is a wreck. I've lost 10 lbs. My thigh muscles are atrophying, my posture is not so good, My right leg from my ankle to my hip is so so tight. I really needed a care plan. I need little goals in my life.

Yesterday we went to the movies. It was the first time I sat in a chair in 6 months. The steroid injection seems t be working a bit and I can feel less inflammation. My hip feels ok. We saw The Dark Crystal up the street. I felt excited and full of hope to be sitting through a movie. For the first 10 minutes I felt fine.

I did this as a sort of experiment, to be mindfully aware of my pain. When I sit, it's like an alarm goes off in my brain. It took months to figure out what is happening. My joint gets really sore, it starts to get swollen. My ankle gets tight, slightly numb. My iliopsoas muscles get tight and squeeze my ribs. I always feel nausea. My heart beats fast. I get anxious when I do not feel good in public. Now that I know it's my hip, I can have better stress relieving thoughts in my head. By the end of the film, which was amazing, I was so uncomfortable and sore. I don't know if PT can help with this.

I miss sitting! I miss sitting and sewing, reading, eating, everything we take for granted. Oh to sit, how lovely.

I ordered a really cool lap embroidery stand and got it today. Now I can relax and recline back in bed while I stitch, pain free.

David and I are doing a cleanse. We are vegan and are eating all raw food. I usually do a juice cleanse, but I don't want to lose any weight. We also take this really powerful intestinal formula to get rid of toxins. It's a week long. Avocado cucumber soup is just the best.

Sunday, August 4, 2013

unscrew my leg

It's been 8 days since i've had my steroid injection. It feels very different this time. My pain has gotten worse, but I'm hoping it will get better. I feel the inflammation has subsided, but the purity of the joint pain is really shining through. My joint feels heavy and loose. I feel deep aches and nerve pain. Walking 20 minutes is really pushing it. I've been taking the bus more and have to stand in the back with my cane, enduring the stares and my own fatigue. Im still waiting on Dr. Mayo's response. I went ahead and made an appt. with Dr. Downer in Seattle in case Mayo can't see me for awhile.

I start PT on the 7th. I have no idea what this will entail, I can barely do anything physical. I just want to go in there and beg for pain relief. I have been feeling so embarrassed about my own weakness. This weakness is startling! My whole rt. leg, especially my ankle has gotten so weak, almost numb since the injection. I can't really place the pain anymore. It's deep and angry. I don't know if it's the muscles, the ligaments, my bursa, my labrum, my nerves, what is this pain?

My dreams have been so full of anxiety. Having to explain myself, describe my conditions, describe the surgery, what am I feeling? The pain seeps into my dreams. I can't even sit or run in my dreams, it's like having this huge anchor weighing me down. My leg is trying to fall out of my pelvis.

David is leaving in 4 weeks. I will be alone for 2 months. I plan to immerse myself in PT and crafts, reading long novels, writing, taking care of my cat, writing daily lists to keep busy.

I really don't know how I'm going to pull this off. The stress. My own mother tells me she can't sleep well anymore, she's having anxiety and panic attacks. When I was 3, my mom was in a terrible accident and hurt her leg very badly. It took a year to heal, they told her she wouldn't walk again. It took so much energy and effort and patience. I think my hip issues are hitting her hard. She really does not trust in this PAO surgery. She wants me to get a hip replacement, but I don't have any arthritis to merit that.

Embroidery allows me to become meditative. Focus on each stitch, think about the next task. I need to get one of those hoop stands so I don't have to bend my knee behind my hoop. I can't bend my knee anymore, it's the worst.

I know I will have to deal with a lot of solitude and isolation soon, so David and I plan to slow down our lives and enjoy simple things together like our garden and cooking and canning.

my first embroidered wheel. Im learning to do more weave techniques.

Friday, July 26, 2013

Hip injection woes

I had my 2nd steroid hip injection today. My first one was back in April, I felt the fear, but the doctor did it fast, within 5 minutes. I had 2-3hrs of pain relief from the local anaesthetic. The next few days I was pretty sore and in pain, but after 4 days all my pain started to simmer down, including my low back pain, tight ribs, thigh muscle cramps and joint pressure.

Todays visit was a bit different. I had it done in a hospital. The doctor I met turned out to be a new graduate. I didn't realize that the main doctor was going to be training him on how to do this hip injection. They used a different steroid. I layed on that cold table 45 minutes. The student doctor was devoid of all emotion, not a smile, just this sort of creepy stare. It made the room colder. So as I shivered I thought about ocean waves and koala bears. When he finally gave me the numbing shot I felt relaxed, it should only be 5 minutes. They used flouro and injected dye. I dunno what was going on, but it took forever. I kept my eyes closed so I didn't know the needle was in until I felt this odd, deep achy pain. The main doctor was pretty much saying "you're not doing it right, try this angle. She told me he hit the bone. What an awful, sick feeling. I felt a little panicky, but stayed in my calm waters. When I was done and allowed to sit up, the main doctor was gone. I got dressed in the bathroom, so relieved to have it over. The deep bone ache still with me. My joint feels heavy and I feel deep groin pain.

My boyfriend took me directly to Audubon where he volunteers so I could see the birds and the beautiful forest and trails. He feeds baby birds and cleans cages. They have a handful of resident birds. I met Ruby the turkey vulture, Julio the great-horned owl and a beautiful raven. I used my cane and hobbled around. I usually don't limp, but couldn't help it. It just feels weird. My friend drove me home. I iced my hip 20 minutes. I feel a bit disappointed that the numbing shot didn't work. I expect to be in high pain a few days until the steroid kicks in. I have so many summer plans I want to do. I haven't been able to sit in months, so first thing I'm doing is going to the movies.

Even though my experience sucked, I have noticed a few things about myself.

1. I am getting better at calming myself down before a scary procedure. I am better at focusing on my breath. I can always keep my sense of humor.

2. I wouldn't say I have a high pain tolerance, but I can process it differently. When I feel the ouch, I know the pain will subside. Pain ebbs and flows. So even if I feel intense nerve pain, it doesn't stay like that forever. Most of the time I feel dull aches and pains, discomfort, tightness. It has become my background sensory input, but I can choose to put it in the back of my mind if I have to, even if it means distracting myself.

3. I know I will be experiencing a whole lot more pain in my future when it comes PAO time. My joint seems like its killing me now, but it's probably nothing to bone/muscle/skin healing pain. I think I am learning to accept my fate a little bit more. I know I will be scared out of my wits, but I don't have to suffer from fear until I'm directly confronted with it.

I plan to start PT next week. I chose someone at my local gym up the street. I prefer they have worked with hips before, but I really just need light PT. I may join a water aerobics class. I gotta get this body moving. I want to be somewhat in decent shape by surgery time.

I sent all my chart notes and MRI/Xrays to Dr. Mayo up in Wa. I was told he will let me know in a week or two if he will see me. I do not have anymore alternatives.

I just bought the book A guide for adults with hip dysplasia.

It's pretty good at summarizing hip anatomy and the various procedures and surgeries. It seems like a great guide for hospital stays and post-op stuff. I like that it includes lots of personal testimonies of hip people. It does give some good websites and books to help with PT and pain. It's not super detailed, but I'm glad I got it. I can now show my friends the diagrams of a PAO and what hip dysplasia looks like.

My new ice pack came in the mail. I thought it would be bigger and wrap all around the hip, It's only a foot or so long. The photo was a bit misleading. I am a small skinny person and it covers only one butt cheek. However, the straps make it amazing. It gives it pressure and I can walk around with it. Plus I got an extra ice pack insert so I can sit on it for full coverage.
So, I plan to start another pain journal to keep track of how I feel after this injection. I was pain free last time about 4 weeks. I was afraid to sit and work out, but this time Im gonna do it anyway. I know the pain will come back, but I need to enjoy myself. The inside of my apartment is feeling stale and small.

My bf's car died and we had to junk it. He also lost his job because he used that car for his delivery job. It actually has become a relief, that car leaked so much oil and there was no air conditioning so it's been miserable in the summer heat. He loves public trimet. Im taking the bus more too, with my cane, and it's helping me get over public phobia. I don't mind the looks and stares anymore. In fact, people are nicer to me. And I get to sit up front with the elderly. There are a few young girls with canes like me, we are out there. One girl had a bright pink cane. Maybe I will lift my cane to them someday, like nodding a hat or saying cheers.

Friday, July 12, 2013

seam rip my hip

What a pressure cooker week this has been. I am recovering from a weird flu, havnt been sick in ages, but this was miserable, stomach cramps and fever blah. I have been waiting ever so patiently on surgeon 5's decision if he will take me as a patient and do an arthroscopic labral tear and whatever he wants. They called today to say he is not comfortable taking me as a patient. What does that mean? They wouldnt give me an answer, but when I asked if I need to see a PAO specialist they said yes. Like all the other secretaries, they always act so cold and weird when they were so sweet and nice in the beginning. It really floored me. He has nothing to say about my MRI, my predicament, what to do? He specializes in complicated hips too.

Right when I started to reel from such loss and such feelings of doom, David handed me a letter. I opened this letter and this colorful cartoon card had this to say:

"I heard your Whatchamacallit got all out of whack and discombobulated. Its a good thing they have those thingamabobs to fix your doohickey!"

Inside the card was a letter from David's family with a check of $2800. They pooled their money together to give to me to help me "pay bills, see doctors, get appts, get healthy, etc"

I couldnt even read the letter, I just cried and cried, I dont even know how to feel. It was such a mixture of complete doom and then such unexpected surprise and love.

The letter goes on to say how much they all love and care about me. His whole family, parents, brother, cousins, aunts,uncles, grandparents, raised this for me.

My own family, love em, would never do this!

I just sort of sobbed in a surreal stupor, it's been a while since anyone has really reached out to me, to help me? wow....

I plan to write an email of my deep gratitude and send a mass email. His family is just amazing, I wish we lived closer..

oh man.. first thing I am getting, full wrap around hip ice pack! And thigh muscle roller! Acupuncture/massage! I hurt my neck so bad from all this stress, I want a decent pillow! ohmygod, a decent mattress? I have just been laying here daydreaming about such luxuries I'll never have.

Of course I am a total penny pincher, I really have to let myself buy for myself.

I still have a long way to go on this strange road to..recovery?

PAO specialist Mayo isn't seeing patients until September, and it could be 6 months or longer before surgery.

Im working on getting a better primary, find a good PT that understands hip conditions, and ways to alleviate all this heavy stress.

Today I embroidered a cat

Its a fire-point siamese portrait of my friend's cat that died.

 It glows in the dark too! white glow floss is awesome!

Thursday, July 4, 2013

a stitch in time

Last weekend, David and I decided we had to get out of the city and go camping. We love camping and are great camping companions. It was soo hot outside so we chose to camp in the Pinchot-Gifford national forest next to this awesome stream. Not too far away is a paid campground with free showers and a lake to swim in. It felt great to get to sun, fresh air, trees. We played dominoes and ate vegan frank n beans (every time we camp). My hip did ok on day 1, but I think I over did it by squatting and bending over. I swam cautiously, oh how I miss swimming. Day 2 my hip was sore and tired and painful, so we went home later. Had to ice myself and rest a few days.

I have been waiting to see surgeon # 5, Dr. Wagner near Portland. I sent him my MRI and chart notes. He is out of network, but he can decide to take my insurance if he wants. I have to wait until next week to hear back from him, if he can do surgery, or help me with my diagnoses, or recommend another surgeon. He specializes in complicated hips. His secretary called and asked if I have seen Dr. Mayo, the PAO hip specialist up in Wa. But he isn't taking new patients until Sep. I feel worried that this means, Dr. Wagner is thinking I need a PAO, not a scope repair.

I recently posted on a dysplasia/FAI group inquiring if anyone has multiple diagnoses and has decided against a PAO surgery (major, intense, bone cutting, year long healing surgery) to get a scope labral repair. These people about ripped my head off. I guess if you have dysplasia, a scope labral repair has a high failure rate and a PAO is recommended. My issue is that my diagnoses are so mild, but my pain is so high. I still don't understand why I can't just get my labrum repaired before any kind of major open hip surgery. They say that getting a scope will further destabilize a dysplastic hip, but I don't understand why, and my surgeons don't really explain it.

So, I am guessing I will have to see Dr. Mayo in a few months, pay an expensive out of state consultation and then be told I really do need a PAO, then have to figure out how to get either free surgery due to financial hardship or beg family to help with a down payment, then financial forgiveness. This surgery is expensive. Also, I have read too many horror stories about this surgery ruining people's lives.

So here I am, waiting some more, biding my time, making plans with David "after surgery" and "after my hip heals" which seems light years away. David wants to get a teaching job in s. korea, maybe next summer, I want to get certified as an activities director's assistant and work with people with dementia, which takes a year. We want to start a family.

Our lease is up this november, the worst timing, right when I will probably get surgery or healing from it. David will be working for 2 months in Cali. I don't know how we will be able to find another place, pack, move, when he is gone and im disabled. Our apartment is awesome, but management sucks and this place is falling apart, we need a change. We want a yard, garden, trees, a door to outside..

Im still doing some embroidery. Im playing Kirby's all stars, fun! I sold some stuff at the street fair, Im reading more, Im doing PT by myself, Im staying positive and trying to laugh at life. Im trying to be ok with going through a rough part of my life. David is so solid and reliable and loving.Thank god because my friends have really abandoned me. I don't blame them, I can't go out anymore, really. I can't sit, at all. And maybe they are waiting for me to be in the healing stage so it's not so awkward. Pain really is isolating. No one wants to hear about it unless they experience pain too. I am a young person, my young friends can not relate to my hip condition at all. I really have to go through it alone.

Monday, June 24, 2013

kite festival

 I am spending some time in Lincoln City where my mom lives. I needed a change of scenery and some stress relief from hip related issues. It just so happened that the kite festival was here, right on the beach by mom's house. The whale kites are life sized, how cool! The first day there was absolutely no wind! But it was a beautiful sunny day. The second day there was lots of wind, but it was pretty overcast.

My hip has been feeling ok, so I was able to walk on the beach and fly my dragon kite! People came from all over for this festival.

The trick kites were amazing and large groups would synchronize them to music. Everyone was in good spirits.

David came to visit me for a day and lay in the sun. We are thinking about moving to the coast temporarily just to get away from city life. Lincoln City is closest to Portland. This town's economy depends on summer tourism. Winter time is pretty dead. But I think we need some time to ourselves.
 I saw surgeon #4 and it was very perplexing. His theory is very different than all the others. He says that I don't really need surgery, say what? That my pain levels don't really match my diagnoses and that the dysplasia, FAI and labral tear are mild. But at the same time he said that my hip situation is too complex for him. He said that when I got my hip joint injection I really should have done intense PT, only at the time no one said that. Now I have to wait 2 to 3 months for the next injection, but I should start PT now, even though my insurance won't cover it. It was a big bummer. He couldn't answer my questions and he made me feel hopeless.
But anyways, Im not really buying into his opinions. I need to see a surgeon in Portland who takes complicated hips, Dr Wagner. He does not accept my insurance, but my grandma may help me cover the cost to see him. He is my last hope. He also does arthroscopies and he used to do PAOs. I hope I can see him soon, I gotta get my life back!!

Im working on crafts to sell at this months street fair. I gotta figure out a better income, im sooo poor now a days.

My grandpa died 2 days ago. He was an amazing orthopedic surgeon, he would have done my surgery himself, but he stroked 5 yrs ago. He was a very stern man, very doctor like, very unemotional. My grandma is the same way. Im not too close to them. I may get an inheritance, my dad died 6 yrs ago and his share is divided up to my mom and brother and me. So, we'll see, my grandparents are very wealthy, but sooo weird about money! Im glad I am a modest, humble person, but some money right now could really save my hip. Im so stuck.

Saturday, June 15, 2013

stitching through stress

 Baby shower gift I finished this week. Felt lamb and moon on fabric embroidery hoop

Blanket stitched moon and back-stitched lamb

 I made and sold a "hazelnut" bunny, these bunnies take forever! Its all hand stitched and embroidered.
 Made and sold a socky cat, Ive been making these guys for a few years now, people seem to like them, I put rice in the paws so they are heavier and they can flail when you shake em
 Hip Updates: Got 2 denial letters the second time around and now Im at the hearing level, which means its state level which means I get to talk to someone about my conditions and prove its a medical necessity.

I have an appt with surgeon # 4 in Bend on the 19th, he's a hip specialist who does arthroscopies and hip replacements. Im hoping he takes pitty on me, my mom and I are trying to figure out how much things cost and how much a down payment will be, I have to face the fact my insurance will deny these surgeries no matter what I do.

Also my mom wants me to get a hip replacement instead of a PAO, me too I guess, I dunno anymore, Im pretty burnt out....

My grandpa is dying, had a major stroke which paralyzed him and he's in a coma, can't swallow, so he will die of dehydration, I just want him to go quickly, no pain, its been 3 days now, he's at home with my grandma and hospice. Ive never been very close with him, but its still sad for me. I feel bad for my grandma.

Next week I plan to stay at my mom's house at the beach and chill, I need a change of scenery and perspective. So I will just stitch and stitch some more until the street festival later this month...

Thursday, June 6, 2013

summer hips

We celebrated David's 35th bday in a yurt at Champoeg state park. My hip was feeling ok and we both have been really craving the outdoors. We love camping and everything about it. Setting up, making vegan franks and beans on our little gas stove, building a fire, watching birds, bats and squirrels. This time we even roasted vegan marshmallows on a stick, it tasted exactly like it should, gooey and sweet.

Our yurt was beautiful and spacious with a dome skylight and a bed and couch even. fancy for us. I brought my little memory foam pad which saved my hips. The day was a hot one and we couldn't really hang out in the hot yurt until dark. We sat around the fire and made wonderful future plans "after surgery" of course and "after I heal from surgery." David wants to teach English in South Korea, we want to move into an eco-villiage, we want to start a family, I want to get my MA in gerontology and do art therapy, we want to bicycle all over portland, find all the swimming holes, camp in state forests, sell crafts at festivals. It all made me feel sort of sad. Sad that I have to wait and sad that David has to wait.

We tried walking around the park, the trails looked short, but they were long and steep. I hobbled all over the place with my cane. My bad hip felt ok, but my good hip started to feel strained from overcompensating. The next day was even hotter and we left the yurt in search of a swimming hole. Our car has no AC, so the drive seemed long and sweaty. We decided to go swim in the Columbia river, but the parking lot was under construction, so I had to hobble a long way to the water. David jumped in, but it was way too cold for me so I wadded up to my thighs.

We got home late afternoon and my body felt exhausted. This morning, both hips were so sore. So I am in bed today. Tomorrow I will see the PT for the first time and try to figure out pain relief. I only have 3 sessions covered so its gotta count. Im sick of being measured and tested for strength, its all so painful!

Let's see...medical updates....SIGH

1. Got my 2nd denial letter on arthroscopic hip surgery and expecting 2nd denial on PAO surgery.
2. After 3 weeks of phone calls and forms I have an appt to see Dr. Bollom in Bend to talk about which surgery I really need and maybe a second pain injection.
3. I am sending in the 3rd appeals/hearings for these surgeries.
4. I f I get denied for everything, then I may be able to qualify for financial aid in Washington to see Dr. Mayo and get a PAO. I don't know if Oregon has this financial program.
5. My mom is trying to figure out how to raise money for me to see Dr. Mayo for a consult. Its $700. I am trying to get a prior authorization and get my insurance to cover it.
6. Even if everything worked out and I could see Dr. Mayo, he isnt seeing new patients until Sep/Oct and to schedule a surgery could take 6 months or longer *head spins*
7. I talk to medical and insurance people almost every day and it just gets more confusing and complicated.

But anyways, I have been doing art and am selling some stuff.

I made $130 at the last street fair and plan to do it again this month.
I am selling a socky cat and a stuffed bunny for $60
I am working on a baby shower gift for $40

So even though Im still in bed a lot, I can work on my crafts and pay my bills, I hope.