Thursday, May 23, 2013

art over mind

I don't know why I am having such struggles with my appeals, insurance company, primary care doctor, and all these forms. Today I heard the phrase, "this usually doesnt happen" three times.

1. My appeals which I sent a week ago were returned to me by mail and the post office wrote a note saying the address didn't exist, even tho its the right address. Making one of my appeals past deadline. I sent them both separately too.

"This usually doesn't happen"

2. I called to make sure my insurance received the prior authorization so I can see this new surgeon. They never got the fax and have no record of my primary sending it. My primary's office called to say they really did sent the fax and have proof.

"This usually doesn't happen"

3. I called my insurance to make sure both appeals have been processed due to mail difficulties, this morning they said yes, they are both there. Later today the appeals coordinator called me about processing one appeal and when I inquired about the second one she said No they never received it, even tho I was just told they did.

They never even received my faxed signatures. Now she says I have to call my surgeon to start the whole thing over.

"This usually doesn't happen"

My mind is just spinning

Turns out!... There is a mix up of info and both appeals were entered under one surgeon instead of two.

"This usually doesn't happen"

So now they have to figure it all out and everyone is soooo confused and feels sorry for me which does not help.

I can't take much more of this anymore, the phone calls, the communication confusion, the stress.

I want a vacation from it all. I havn't even been able to process my messed up hip and the surgeries I need, its all just a huge pile of paperwork.

ART.. at least I have hobbies to work through this bull shit

I finished Roma's baby book for her 1st bday, many hours went into this

My brother and cousin came over and we made perlers all day to sell at a craft fair at the end of the month

Also I finished my embroidered watercolor portrait of David

I tried to add a lot of detail to his handkerchief

Friday, May 17, 2013

applications and art

This week has been a whirlwind of phone calls and paperwork. I sent in my appeals for the PAO surgery and the arthroscopic labral tear repair, I will get a response in 2 weeks. I had to get my primary doctor to send a "prior authorization" in order to see surgeon #4 in Bend, Oregon. I had to request help from the special "ortho access team" my insurance offers to see a list of surgeons that do these specialized surgeries. Google search isnt cutting it. I applied for SSI and then I applied to get an upgrade in my insurance called careoregon plus which magically gets me more resources and covers more therapies and perhaps will approve ortho surgeries. All of this takes time. Ive been waiting since January to get surgery and now it's May. It will probably be another 6 months for anything to happen.

I did however get a referral to see a physical therapist. Turns out the more diagnoses you have, the more sessions you can get covered. I have 4 sessions. I went to the first one at OHSU. I was going to get a ride there, but my poor bf ended up in the emergency room with paracarditis again, ouchies. So, I had to take the bus, oh man, so so uncomfortable. I brought my cane and I sat in the back so I could put my leg up on a seat. Of course the bus filled up and I had to get squished to the side and bend my knees, painful and made me feel nauseous. By the time I got there I felt awful and sick.

Turns out the PT was the wrong person. I think she was a student and she seemed unsure of me. She told me I need to see this other PT who works with people post-op from PAO surgeries. I got some measurments done, turns out my hips are very flexible as well as my hands. I was told I will not be able to strengthen my hips due to the tear, but I can do a few exercises to keep toned. I felt pretty pathetic. My pain was so high, but the PT didnt really know what to say to me besides "when are you getting surgery?"

The bus ride home was almost unbearable, it took an hour and a half. I wanted to die. I felt angry at my body. Also when you are so young looking and have a cane, people stare at you, I feel uncomfortable in public. I haven't been prescribed any pain meds. I take turmeric as an anti-inflammatory, but it doesnt help so much with pain. My primary prescribed me amitriptyline and it knocked me out for 2 days, I felt so awful, so now I am going to only take 5 mg at night. I guess it helps with pain, we'll see....


my art is the only thing keeping me going. The stress is just never ending, the phone calls could just go on forever, at some point I just have to stop and focus on my art. It helps me feel productive and relaxed.

I am working on a baby book thats made out of thick felt and embroidering words and images having to do with a seed growing into a tomato plant, its very time consuming, but its turning out great. Its for my bf's niece on her 1st bday. I have 5 days to finish it. It will be 9 pages...

I am also working on embroidered portrait art which I feel is what I want to dedicate myself to. It turns out looking very original and personal. I use iron-on pencils to trace photographs and onto fabric. The watercolor adds some nice depth and the embroidery adds texture.

Im not finished yet, gotta add some shadows and hair and then lots of embroidered detail in the handkerchief.

burningman 09

Saturday, May 4, 2013

Healing through the dark emotions

I found this amazing book by Miriam Greenspan, "Healing through the dark emotions." Grief, Fear and Despair. Im taking the time to read it slowly, a chapter a day. It resonates with what I am gong through and how different people treat me and my medical situation.

Mother: You need this surgery asap and medication for your pain and anxiety.

Therapist: You need this surgery and to focus on the positives in life and not to dwell on pain/anxiety

Surgeon: You need this surgery but you do not have the right insurance. Also, wait for Obamacare.

Insurance company: You need this surgery, you must appeal, write a letter, fax records, apply for disability, submit complaints, talk to DHS worker, see primary physician.

Friends: Good luck with your surgery

Boyfriend: Im sorry you are going through a hard time, im here for you

Me: Im sleepy....

The world of medical insurance is not an intuitive one. Surgeons can be intimidating. There is paperwork and then there is waiting..

I feel the stress and pain in my body and it comes out in worries and sadness and fear. All I want is to have my normal body back with its strength, flexibility, endurance, health. I want this alarm in my brain to shut off.

I am deciding to really feel my darker emotions. Grief, fear, despair. All ive been doing is trying to distract myself from these emotions. I fill my days with art projects, writing, going over medical records, calling doctors, talking to my mom, leaving messages on friends phones who don't call me back, plan for my summer and then cancel plans when I rethink them. I feel scattered.

So, Im going to do things a little differently. Ive been keeping a pain journal, but I havn't been recording my emotions or stress levels. Im going to really try and pay attention to what Im feeling and really experience it fully, where is it in my body? What exactly are the physical sensations that I feel? joint pressure, lethargy, aches, nausea, discomfort, tightness, instability... Emotional: fear of the unknown, anxiety, disappointment, confusion, exhaustion, panic, silenced.

It really is tricky trying to pick apart what Im feeling and where I feel it, what it means to me. Images, thoughts, feelings. Everyone has their own advice they give me. I want to start listening to myself.

Its such a beautiful day, our peas are growing, my cat is sleeping, my house is clean, I have lots of time to think and feel. I am not wasting my time. I am being productive in my personal efforts in my personal journey.

Move through the pain.

Friday, May 3, 2013

Insurance/surgeon wars

My phone woke me up early this morning and it was Dr. Herzka's office, a secretary, never Herzka herself, said its up to me to do the surgery appeal. I told her that Herzka told me in her own words that she would be doing the appeal.

They tell me the same thing: "Your insurance will not cover this surgery, so get private insurance."
This morning it was , "oh, ya know, Obamacare will be much better, just wait for that to happen and you can get surgery!"

I said, "umm, ya I cannot wait that long, I will just start the appeal and then maybe it will be approved" I said, "Its all about the medical code numbers, everything has to match and be appropriate."

So, we went over numbers. I am blessed with having an aunt who is an insurance nurse here in Portland, so I get a lot of insider info, and have internalized the motto NEVER GIVE UP

I have 5 medical procedure codes for getting an arthroscopy in my hip. 3 numbers are denied and 2 are not. It turns out Herzka is piling on these procedure codes and if one is denied, the whole thing is.

All I want is to get a scope in there and see what the damage is, and get my labral tear fixed, especially before I go through with a PAO surgery which is intense, long, severe and scary.

So, I called my insurance and they said, yes, you can have 2 of these procedures done.

When I called Herzka's office back I found out that

1. Herzka has never done a procedure on a patient with OHP state insurance
2. She thinks an appeal is "a losing battle."
3. The appeal is up to the patient (but its "probably a waste of time")
4. She will not do the procedures that ARE funded.
5. Her office has no interest in helping me figure things out. They are annoyed when I call them.

Luckily my insurance people are amazing and give me tons of advice. They tell me, it is never a losing battle, never give up, try to get additional medical info to send in with your appeal.

Luckily, I saw an amazing surgeon in Bend who is advocating for me and knows I really need these surgeries to live a normal life. The reason Ive been denied is because the surgeons in portland are so vague in their chart notes and do not take the time to really figure out how my insurance works. So I am sending my appeals for both Herzka and Huff (arthroscopy and PAO) that will include...

1. Dr Caravelli's chart notes ( more detailed, more diagnoses, more conviction)
2. A personal letter about what is happening to me, how my condition affects me, why I really need these surgeries to happen.
3. A follow up with my primary doctor to make sure all my paper work is in order.

The main issue is that my insurance company and my surgeon's company are telling me different things. And unfortunately my surgeon has no hope, no faith, no open-mindedness about my situation.

Denials are not written in stone, things change, be proactive. If I believed in what my surgeon told me from the get go, I would not have gotten my hip injection, pursued an arthroscopy, gotten a 3rd opinion, or request this appeal.

And she is supposed to be my surgeon, the only surgeon in all of oregon who can do this surgery. I feel so sorry for all her OHP patients who were denied and were discouraged from trying anything else or doing an appeal. Are there other young women laying in their apartments thinking they are doomed and will be crippled the rest of their lives...or are being told, just wait for Obamacare?

...I just got  phone call from the Bend surgeon who said, "I can't believe you were denied, you should be able to get these surgeries even with your insurance, I will help you with your appeal."

wow, so yes, fight for your right to find a decent, caring surgeon as well.

Thursday, May 2, 2013

Longing for my lost youth

I found this old self portrait. Its a 35mm double exposure print of me when I was 18 yrs old. When I look at it I remember myself so full of optimism, wonder, mystery, secrets, the beginning of womanhood. I took this photo deep in the woods in northern Cali. I loved photography so much and did lots of experimental stuff. I remember seeing this photo for the first time after it was printed and felt so amazed that I actually captured the composition that I wanted. And I loved my mossy hair.

I miss my younger self. I do not feel so young anymore, even though I am in my late twenties. I found out today I will not be able to get my surgery that I so desperately need, my insurance just won't cover it. The fear is starting to set in that I may not get this arthroscopic hip surgery this summer like I always thought I would. The fear is setting in that I might have to live like this? For months? How much longer? I can no longer sit, I can't run, frolic, jump, squat, play, dance, swim, climb, make love. My hip pain can be so intense sometimes. I can't believe these surgeons won't help me because of my state insurance. If I broke my leg, they would fix it. They tell me I have to have surgery to repair my skeletal issues. But I have to get private insurance. I just can't afford it, I wish I could.

I will still appeal this denial, as the surgeon said she would, only she isn't. I will request a hearing, I have applied for disability. Only this takes so much time and waiting, which I guess I just have to endure. I had so many summer plans that I will have to cancel.

The steroid injection is wearing off slowly. For a few weeks I could walk without pain, ride in the car, vacuum my floors. Today the pain is at a constant like it was before the injection, mixed with nausea, stress, spasms, aches, stiffness, and a deep untouchable burning. I think my period is amplifying all of it.

Despite it all, I have David. My wonderful, sweet, compassionate boyfriend who is really there for me. Since this whole hip issue happened, many of my friends bailed. I don't blame them. I can't go out anymore. They all say the same thing, "good luck with your surgery." But they don't realize all the waiting I have to do and all the phone calls I have to make and all the forms. Time just flies by and friends stop calling.

But David is always here with me, we laugh together, we listen, we play, we snuggle, we watch films, we cook and eat. We both like the simple things. Everyday we are happy to see each other. When I wake up, he smiles at me and winks, every day since I have known him, over 5 yrs now.

I wish I could accurately describe him with my words. He is so different than all my past relationships and all my past male friends. He is very balanced in his masculinity/femininity. He is very open-minded and worldly. He has traveled the world and lived in different countries. He has the most loving, close-knit family who respect one another and are so encouraging ( the opposite of mine). He challenges the status quo. He is a feminist-anarchist-animal lover. He loves and studies classical music, sees the Oregon Symphony all the time. There is something pure about him, something very wise. Just the sound of his voice soothes me. We have been through a lot together.

Wednesday, May 1, 2013

Happy MayDay

Today is always a special day. I like to celebrate spring, warmer weather, and workers rights. Portland usually has a large rally downtown. I couldn't attend because of my hip, but ive gone in the past years and I always find such inspiration. We have a pretty high unemployment rate here and I think in a way, people are more drawn to creativity and innovation. Many people create jobs for themselves and work together, share resources, follow dreams. This is the brighter side of unemployment. When I am unemployed I love to sell things at street fairs and be able to pay rent. I love to see people come together and talk about future possibilities.

 Of course many many people do not have the opportunity to persue alternative work. And healthcare is such a necessity. Sometimes I feel I could just work for myself, but then I really need healthcare and financial security. MayDay is about fighting for these rights, better wages, better healthcare, better jobs.

My morning was filled with phone calls between my insurance company and the Ortho surgeon's office at OHSU. What a headache. I have been denied arthroscopic surgery and so I need to send an appeal. My conversations kind of went like this:

Me: (to surgeons office) "Hello, Is the Dr. sending an appeal? I need her to"
Secretary: "We are working on it"
Me: "Does that mean yes?"
Secretary: "Ya know, you were denied and probably will be denied again, you should get different insurance"

(Me to my insurance company)
Me: "Hello, Why was I denied"
Insurance: "There wasn't enough info submitted, you should write a personal letter and fax it to your Dr. and they can have it in their appeal letter to make a better case."

(Me to surgeon's office)

Me: "Can I fax you a personal letter to include in the appeal case."
Secretary: "No, you are doing it all wrong. By the way, you will not be funded, so why try."
Me: "I was told I should appeal and write a letter."
Secretary: "Havn't you talked to Jenny? She should have told you how to do things."
Me: "Who's Jenny? No one ever calls me back, tell her to call me."

(Jenny, the dr.'s scheduler)
Jenny: " hello, your insurance will not fund your surgery, you need to upgrade to the plus plan."
Me: "really? no one has ever mentioned the plus plan, what is it?
Jenny: "I dont know, but if you get on it, your case will be accepted and you can have surgery."
Me: " Is the Dr. sending in the appeal anyways?
Jenny: "No, she will not send the appeal because you will be denied."

(Me to insurance)
Me: "Can I get on the plus plan so I can get my surgery?"
Insurance: "No, you are not pregnant"
Me: "So, plus is only for pregnant women."
Insurance: "you do not qualify."

These phone calls seem more like tornadoes. Everyone tells me something different or I need to have better insurance. The weird thing is. And I know this because my aunt is a local insurance nurse who deals with people like me everyday. People Do get this surgery even with their state funded insurance. And she doesnt know why I am having such a difficult time getting this surgery approved.

Only one surgeon in all of oregon does this surgery, so I really need her to send this appeal and do a better job! Her medical chart of me is so vague and full of misinformation. Its pathetic.

So far, OHSU treats me like im a nuisance with laughable insurance. They withhold information, never call me back, refuse to give the dr. my messages, and they all tell me to get private insurance. Even the surgeon is not advocating for me and wants me to get a major reconstructive surgery from someone else.

So, Im pretty stuck and I really need this surgery to happen soon. There arent any alternatives, its like if you arent bleeding, then its not an emergency. Even if you have expensive amazing insurance, the same things can happen.

So, looks like I gotta see this other surgeon in Bend to help me figure out what to do. I really thought these surgeons would help me because I am young and shouldn't be having this condition destroy my life. But I guess its all about the money, and Im just a charity case to them.