Sunday, December 14, 2014

One Year Post PAO

I made it! One year! I have been dreaming of this day for a long time. I am all healed from my screw removal surgery. I can now wear regular pants, even a belt. No more screw pain. I feel like my joint is also more flexible. I can sit cross-legged longer. I'm back to doing pool PT most days and will start weights soon....again...

Im ready for this year to end. I need closure. I need to start over. Some last little kinks I am dealing with: my joint does get tight and I still have to work on some joint pulling techniques to help with tissue joint impingement. However, most of my hip pain and stiffness is gone. I don't know if I will ever be completely pain free, it may take time and it may always be low grade, which I am ok with. My ankle still feels weak and turns inwards. Ive had this problem for awhile now, but acupuncture has helped. I think my knee muscles may be weak too, which affects the ankle. I wear an ankle fabric brace to bed and this helps tremendously!

I will continue to do PT and strengthen myself. I have been told by several surgeons I should avoid jogging and running to preserve the joint longer. So, I have taken up swimming and soon, bicycling. I do yoga on my own, but would like to join a class soon. Stretching really makes a difference in my daily pain level. I have to keep myself limber.

This has all been worth it. PAO surgery, Gallbladder removal and screw removal. All have been absolutely necessary for me to get back to normal. I feel more pain free now than I did 5 years ago, maybe longer. This New Years, I plan to get my drum kit out of storage and play again, after a 2 year hiatus! I want to get my old bike repaired so I can ride it. Im going to go snowshoeing for the first time this Winter. I am going back to work after 2 years of pain and misery. Ive been doing online school studying Gerontology and start training as an Activities Director next term. Ive had a lot of time to reflect on my life this year during recovery. I want to start a family in the next few years. I want to surround myself with only loving people. I want to become much more physically active and try new things and travel. Life is too short and I am starting to realize that now.

I want to always be content with sitting. Peacefully sitting in my own body and having such gratitude and love. I love my pelvis and I love my labrum...

Monday, November 10, 2014

11 months

In  my 11th month I decided to find a local hip surgeon who would remove my PAO screws. They were really bothering me. I had trouble sleeping on my right side and I still couldn't wear pants because the screw heads poked out under the skin around my belt line. At the same time though, I felt like maybe I was just complaining too much and I should just get used to them. I had spoken with Dr Downer's PAs about getting them removed and was told different information such as: You have to wait a year, Dr. Downer rarely takes them out, We'd have to see you in Seattle first for an exam, You can only have it done by Downer. Actually none of these are true. I then spoke with a PA who was involved with my surgery and he told me, yes you can get them out if they bother you. I asked about getting them out by a local Portland hip surgeon and he told me I would have trouble finding a surgeon who would do it. I found a surgeon right away and was able to schedule my surgery in 4 days!

I happened to find Dr Gustav Fischer who is a new surgeon at Providence Portland. He is a hip surgeon, but it turns out he also has been trained in PAO, which was a miracle to me because there are maybe one or two in Portland with this kind of specialty. I went into the appointment yammering on about how my insurance probably will not cover this, how I can't afford it, I can't wear pants, etc. I thought I would really have to beg. I had an xray taken and Dr Fischer told me my bones are fully healed. He had called insurance and gotten it approved, all within 10 minutes! Another miracle. He told me I'm scheduled for Nov 4th, 4 days from then. I really thought I'd have to wait a few months. He told me my biggest screw had a high chance of breaking, but he would do his best to get them out. He even told me I could keep my screws.

I felt so happy I could barely talk. I went home and celebrated Halloween by going out dancing for the first time in a long time. I ended up dancing for hours, despite my sore hip. It felt good to be around people and dance the way I used to. I kept telling myself to really enjoy it before I am yet again recovering in bed.

I was able to get my surgery done first thing in the morning. I was at the hospital at 5:30am and was wheeled in at 7:30am. I would be having a spinal. Right before surgery there was an issue with my EKG because I have an abnormal heart beat, but its normal enough for me. There was some hesitation, but I convinced them that's its ok because I didnt have an issue with my gallbladder surgery which was very recent. Everything went fine anyways.

Screw removal is a very quick surgery, its the setting up that takes the most time. They use the same scar line and open just a small portion up. They actually use a screw driver and drill. It takes about 2 weeks to fully heal. I remember waking up and I was still paralyzed from the waist down. I was also shaking pretty good, which I knew was happening from my body releasing trauma. I was very uncomfortable from not being able to move for so long, but my feeling was slowly coming back, which fascinated me.

I went home in a few hours and slept a lot the first two days. I am now six days post-op and have to wear this uncomfortable water-proof bandage on my hip. The first few days, my skin was very sore and raw feeling. I had to lay down a lot. Today I feel like I can walk around a bit and the pain is fading. I can almost sleep on my right side

I can tell that this is going to be awesome. I no longer have that nagging screw pain. I plan to buy a pair of pants as soon as possible. Ive been wearing spandex leggings for so long now, I forget what pants feel like. In another week I will see Dr Fischer and have the bandage removed. I hope my scar still looks smooth. I worked really hard on my PAO scar. For months I oiled and massaged it, stretched it, used a moxa stick. It took a long time to fade...but I love it.

It will soon be my one year on Nov 13th. I have had 3 surgeries this year and a lot of recovery. The amazing thing about my surgeries is that after I healed from each one, I felt a dramatic reduction in my pain level. I became more able bodied, more flexible, stronger, happier. I feel I can finally move on. I plan to start working after the new year. I can't help but just sit here and smile to myself.

Monday, October 20, 2014

10 mo. post RPAO

I turned 30! For my birthday I went to the beach and walked through forests. My bf took this portrait of me sitting pain free, a big moment in my life. I sat cross-legged and felt comfortable and full of joy by this tree.

My 10th month has been very proactive in my healing. Im all healed up from gallbladder surgery and have been enjoying the new benefit of sitting pain free. I no longer have to worry about going out in public and wondering how to stand or sit in pain. I feel such freedom in the simple act of sitting.

I have still been experiencing hip pain, mostly at night. My joint can be tight, stiff and uncomfortable in any position. My right leg is affected too and I struggle with chronic tension. So I have taken it upon myself to really focus on pain relief therapies. I live near a healing center that happens to accept my insurance, such a rare treat. I am taking an amazing class called Trauma Release Exercises. Also called tension release. The main point of these exercises is to exhaust the psoas muscles so that you end up shaking a little while lying on the ground. These "tremors" are caused by a Nuerogenic process that we all have and as you tremor, your body instinctively seeks out any tension or trauma and shakes it out. It can be a very bizarre feeling. All of my tremors go straight to my hip joint. I end of shaking and kicking my leg. Its weird, but I have to say I feel so much better after 20 minutes of shaking. Even my ankle is feeling more aligned. I feel more flexible. I love this class and wonder why TRE is not well known.

I am finally able to use the machines at the gym. My gallbladder was really preventing me from lifting weight and pushing my PT to the max. Now its time to really build up my muscles. I can walk great, but its still hard for me to get up from a squatting position. I am so ready to really work out!

I just love October and Halloween. I have not celebrated Halloween for two years because of my pre-op pain and post-op recovery. So this year I am immersing myself in Halloween fun. I plan to dress up as a skeleton. It seems to suit me this year. I used to love dancing for hours at clubs. I am unsure of my dancing abilities, but I have to start somewhere.



I am dancing Thriller this year. Its perfect because as a zombie, the dance can be jerky and stiff, which is how I feel sometimes. Its a long dance and very rewarding to perform for Thrill The World. I know I can do it.

Happy Halloween!

Tuesday, September 9, 2014

9 months post-op

9 months post-op is a wonderful place to be! I am also 1 month post-op from gallbladder removal. It was such a good decision and all of my side pain is gone. I can finally sit pain free! My crazy gallbladder was really affecting my hip, my PT, the way I walked, everything. It feels so good to experience my hip in a new way. Now I can really focus on how my hip actually feels.

I had to temporarily stop PT as I couldn't do much after abdominal surgery. Wow, compared to a PAO, this surgery was a quick recovery despite the intense pain and agony the first week. It was a nice feeling to be able to walk around for this recovery. I will never take walking for granted.

It took a few weeks before the abdominal pain went away and I was afraid of sitting. I went to the movies and sat through a movie where I would previously would have felt pain and nausea. I felt great, no nausea! What a relief. I am just so happy about it.

My joint is still stiff and sore in the mornings and during the night. I really have to stretch, strengthen and walk everyday. I was never able to do much intense strength training because of my highly inflamed and stone filled gallbladder so I am looking forward to starting. I guess I may be a little behind some other PAO warriors, but this is my path and I had to deal with two major health issues at once.

Tomorrow, Sep. 10th I will turn 30!!! I feel so positive and excited. For the first time in maybe 5 years I feel active, fairly pain free, energetic, optimistic and full of life. I enrolled in school to start my certificate program to be an Activities Director and work with seniors. I can now start planning for my future. Its such a big change. Two months ago, before my gallbladder diagnosis, I couldn't understand why I was having such a difficult and painful time sitting. I thought I was permanently crippled. Even my PAO surgeon told me it doesn't make sense and I just needed more PT. I was feeling pretty low. I felt stuck. But I am a strong person and I have dealt with so many doctors. I knew something was wrong and I kept pursing it, asking for help, not going away. As soon as my gallbladder was removed, I felt a huge wave of release and its like my brain can now stop sending so many pain signals. Also, I can eat whatever I want. I am vegan and am healthy, but any fat or oil just killed me. Avocados actually hurt me, how crazy. My digestion has really been amazing. I know gallbladder disease is common, but wow what a terrible thing to have to suffer through!

For my 30th, I am going to the beach for a week and want to hike around and SIT in many places. Im going to SIT on boulders and cliffs and grass and in the woods and on the beach and around a fire. I am feeling beyond grateful. I feel like I have been given a second chance. Happy 30th Birthday to me!

Friday, August 1, 2014

8 months Post PAO

I am 8 months post hip PAO surgery! I embroidered this cool owl. I am feeling much more active and am beginning to wake up with less and less stiffness and leg pain.

My PT told me I was walking with my op-leg turned inward and this incorrect walking was causing me muscle pain and tension. Ive been working in strengthening my knee and walking with my feet straight and feel relief.

I am able to walk and hike about 3 miles now. Being Summer time I am enjoying the outdoors and daily walks. Last Summer I was stuck in bed most days in so much pain and fatigue, what a huge difference!

I still do pool PT and daily stretches, some yoga, some cycling. My legs are looking more even, though I still have weak joint muscles to work out. Really, I think it will take a year to fully regain my strength and mobility. I still think about my hip every day, but it is less distressing. When I squat I am not even and my joint gets sore. Its also difficult to squat and stand quickly. I was going to start a new PT regimen involving weight machines and more intense workouts, but it turns out....
I have gallstones! There is a whole story to this and This has been the mysterious cause of why I still Cannot Sit normally! My hip joint is getting better, but my "deep rib pain" on the same side (Ive been writing so much about this symptom, probably most of this blog) is getting worse. Enter... Misdiagnoses....

When I attempt to sit, my main symptoms are deep tightness, pain, swelling and nausea. I have been experiencing this since my hip hurt 5 yrs ago. When I have told doctors and surgeons about it, it sort of baffles them. I have been told I have a "subluxating rib" or a pinched nerve or bad posture or it's caused by my hip dysplasia or my anxiety. No one would take an x-ray, only of my hip. Finally, last month when I just couldn't take it anymore, I walked in a new Dr's office and pointed to my rib area and said "X-ray this spot." And they did. And right where I pointed, 3-4 Gallstones showed up! I was able to have an ultrasound right away to confirm it was my gallbladder!

Now it all makes sense. The nausea, the pressure, the bloating, the swelling, the pain.... I never made the food connection, but after I was diagnosed, I quickly noticed if I ingested any oil/fats, that "deep rib pain" increases in about 20 min and lasts an hour or more, sometimes days. I have a low functioning organ. And I found out, most of my mother's sisters have had to get theirs out after years of "back pain."

Who Knew...
I knew something was wrong. My op-hip and this littl critter are so close to one another it can be difficult to differentiate the pain, especially my pre-op hip pains and my post-op healing pains. When I sit, I think my guts get kind of squished and causes nausea and anxiety. I've actually gone to mental health therapy over 2 years now because I just couldn't figure out why I have such trouble sitting...

I was able to meet my gallbladder surgeon quickly and am scheduled to have surgery next week Aug 7th! I have been feeling ill and uncomfortable from this side pain and can't wait to get it out. It is done laporoscopically and I think recovery takes 2-6 wks. I think I can handle it...

I think I will be able to start sitting once this thing is out of me...fingers crossed...

I am very lucky that my intense pains all these years have X-ray evidence. My disabling hip/leg pain and side/rib pain are real, tangible, you can see it. It took a lot of going to doctors and begging for help, trying all kinds of therapies and patience. I feel such relief and gratitude. I trust that my pain is meaningful and I trust in my intuition. Sometimes in life... you just have multiple medical issues all at once.

This is my last Summer in my twenties. Just as I was able to really enjoy mobility, my next surgery will take it away, but not for long. I turn 30 in September and I hope by the time that happens I will be feeling good and get a fresh start...

Tuesday, June 10, 2014

7 months post-op

7 months post-op! I rode a bicycle for the first time. It wasn't the most comfortable experience, but I am able to do it for a short amount of time. It felt good just to get back on the bike.

I have been feeling much more active and am walking very well. I moved into my new apt and it feels like such a nice fresh start. I live near a beautiful park with lots of trees and ducks and I walk through it everyday.

I still do pool PT almost everyday. Tomorrow I meet with a physical trainer to learn the workout machines at the gym so I can start weight training.
I will be seeing a Naturopath Dr this week for the first time to help me with musc/skeletal pain issues.

I think I am experiencing many secondary hip pain issues from years of poor walking/sitting posture. I have been working with many different people to figure out why I am not sitting well.

1. My new PT says I have soft tissue hip impingement from really tight muscles and scar tissue. It was suggested I got gluten-free because of my chronic inflammation that could be due to gluten intolerance. I feel like I am unable to relax my op leg no matter how much I stretch or exercise. I need deep tissue massages as well to break up the scar tissue.

2. My chiro and some other medical people think I have a subluxating rt. lower rib. I have felt a lot of pain in this area for years. Chiro seems to help as well as stretching. It just keeps coming back. I think acupuncture would really help, but my insurance just wont cover it, grrr.

3. I have been gluten-free a couple of weeks now and I do feel a difference, not so much pain-wise, but in my energy. I feel more alert and am eating lots of whole foods. I think it takes time for pain and inflammation to subside, so I will stick with it.

4. Sitting is still an issue for me. I think its a combination of things. Compared to other post-op PAO people, I seem to stand out with my sitting issues. Everyone is different. I do notice that I no longer have low back pain, so thats been great. I try to sit for a few minutes everyday. I tend to feel nausea and my joint gets sore as well as my rib. I hope my new NA DR can help me figure it out.

I am waiting for my court hearing for temporary disability, SSI. I don't know if I will get it, but I am going to try. Its been over a year since I applied and I have had two denials, but I think that is pretty common.

I have no idea when I will be able to work again. If I can't sit well, I may have to find something that involves standing and walking all day which sounds pretty miserable. I hope by the end of Summer I will be able to sit fairly pain free. fingers crossed!

Thursday, May 8, 2014

6 months post-op

I am 6 months post -op. I have come a long way in my recovery. I am on a positive healing trend and even though I still struggle with some pain, especially with sitting, things are getting better.

I am much stronger than I was a month ago. I walk normally, even weight, no more limp. I can walk up and down stairs no problem. I am able to sit cross-legged for a few minutes. I have gotten most of my flexibility back.

I saw Dr. Downer last week, it was the first time he has seen me walk unaided. He is very pleased with how I walk and how my bones are healing. My one issue is the sitting pain and I also feel intense pain above my hip in my low rib area. My acupuncturist thinks it could be a pinched nerve due to poor posture. Downer told me it is probably from poor posture. I really haven't sat in over a year and im sure my core muscles are weak and atrophied. I was afraid that I might have to have a scope. My labrum was not repaired and I have read many blogs and posts about people getting scopes after a PAO. Downer reassured me that if I needed a scope, he would know about it and he doesnt think I will need one. I am to work on posture and I need to be patient in my recovery. He told me to see him in 3 -4 months if I still experience pain.

I am really working on changing my beliefs and perspectives on pain, especially chronic pain. There are many things that are helping me.

1. I see a chiropractor, they adjust my low back where my ribs hurt and I experience a lot of relief. I am stretching my core muscles and doing core PT like planks, bridges and crunches.

2. I have noticed my poor posture. I avoid sitting at all costs. I recline in a recliner with my legs straight. I tend to lean to my right side, the painful side. Its like I am collapsing in on myself and my rib/nerve flares up and I feel intense pain and inflammation. I am starting to sit straighter and engage my stomach muscles when reclining and standing. This is helping reduce pain.

3. I still take turmeric. 500 mg twice a day.

4. I am starting to walk a lot more and push myself to really work out my joint. I can walk 2 miles now, probably more. I love walking. I hope to always appreciate mobility. I do PT everyday. I joined a local gym and do pool therapy, hot tub and sauna. This helps with relaxation. I will soon do some weight machines...

5. I am seeing an amazing therapist who is guiding me with Acceptance and Commitment therapy, positive thinking, visuals, art therapy, cognitive behavioral therapy. Pain can be seen as a gift. It allows me to be a empathic, compassionate, patient person. It allows me to explore my creativity. My pain has become more tolerable and less because of changing negative thinking patterns.

Good things happening in my life...
I am finishing my first online course in Gerontology, exploring career options. I want to pursue a certificate as an Activities Director working with elderly people, perhaps in Memory Care. I am visiting care facilities and once I can sit better, plan to volunteer and "shadow" Activities.

I get to move out of my apartment of 5 years, away from its 35 stairs, into a ground level apt in a lush, green neighborhood near some of my favorite places in Portland. Its got a strong 1970's theme, avocado green bathroom, orange kitchen, brown shag carpet, gold windows, vintage appliances that work.... I feel excited to make changes in my life, to start fresh, away from all the pain and heartache I felt in this apt. I will get to see birds and squirrels through our new large windows!

Tomorrow I am going to a school of oriental medicine to get more affordable acupuncture and massage. Then Im starting at a new PT with a more experienced PT to step up my strength training and acquire new posture skills.

I made this bunny!