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.