Sunday, December 14, 2014
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
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
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.
Tuesday, September 9, 2014
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
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....
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."
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
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
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!
Tuesday, March 25, 2014
I am spending some time at the Oregon coast. There were many things that I didn't think I would be able to do, but I have proved myself wrong! My motto is I CAN
1. I can walk aid free, no crutch or cane. I have been pushing myself to walk more each day. I think I can walk about 1/4 mile, maybe more, it is exhausting, but I can do it.
2. I can walk on the beach. I thought sand would be too hard to walk on, but I walk slow and cautiously. I think of it as strengthening my joint.
3. I can walk up and down stairs. I have been using my cane the past few weeks for stairs, but I keep leaving my cane in odd places and so I have started to do stairs aid free. I do still feel pressure in my joint, but it is tolerable.
4. I can stand on one leg, my op-leg that is. This does hurt a little, it feels achy afterwards, but the pain does go away.
5. I can sit crossed legged. Im always a little stiff at first, but after about 5 minutes I can settle into this position on the floor. I can sit about 10 min.
Sitting in a chair is still an issue for me, but as long as I sit on a padded surface, I can sit about 20 minutes. In a straight backed wooden chair, maybe 30 seconds... I still experience a lot of joint aches and pains,but they do not last all day.
I think being in a different environment is extremely helpful in my recovery. I am currently visiting a town where no one knows me and I feel like I can shed my inhibitions. I can use my cane or not and it doesn't matter because no one recognizes me or will hold judgments. I notice that I am pushing myself harder than at home. I am doing new PT exercises. I actually hiked a little the other day on a flat trail. I am working very hard to walk with my feet straight, standing tall and putting equal weight on each leg.
My limp is gone. If you didn't know me you could never guess I had a PAO. I am keeping up acupuncture and taking Chinese medicine. Turmeric really helps me and calms my joint.
I think its very important to keep up with PT. I do all my PT at home right now, but I plan to join a gym soon and do more pool therapy and use a tread mill. PT takes time and can seem daunting. It is uncomfortable and takes effort and dedication. So I plan to do PT 15 mins at a time. Usually once I get started, I am motivated to keep going. I always feel great after doing PT. I am working on my flexibility and standing strength. I am not using any weights just yet.
Whatever abductor muscle they detached is still very sore and tender. My PT sometimes says "No pain No gain" but I can tell I am not ready to mess with this muscle just yet. It is still healing. If I lay on the floor and lift up my leg, it engages that muscle. There is a difference between pain and "working out" pain.
I am getting ready to go back to school. Since I am not sitting well I am doing online classes. I need something to focus on besides my hip!
Thursday, March 13, 2014
Now that Im at the point where I am doing PT and walking a little, this rib pain really masks my hip joint pain. PT seems to make it worse. I saw my acupuncturist yesterday and I actually put little smiley face stickers all along my rib where I felt intense pain and tightness. He instantly knew what it could be. Intercostal rib pain, probably a pinched nerve! He stuck some needles in and I tried to relax myself for a while. Then he did some major low spine adjustments ( they felt major to me, but im new to Chiro stuff) I felt instant relief! I could breathe deeper and I instantly stood taller and walked better. My low rib isnt tight anymore. He told me I will probably experience nerve pain again, but I will continue to have his help. He said he was going to help me through this. I feel so thankful and appreciative.
The Chinese medicine herb seems to be helping me. Its supposed to help with pain and aids in strengthening the joint. I do notice a difference. I also take turmeric as an anti-inflammation. Im pretty new to alternative treatments, but so far it seems to be very effective. Ive done lots of western medicine in my recent past (steroid injections, pain meds, muscle relaxers, anxiety and anti-depressants) They were just so temporary and I didnt respond very well to them. The only reason I chose to do acupuncture is because my insurance covers it this year. I feel angry and upset that I was not able to get this treatment last year when I was suffering so much with pain and disability.
I feel great today. I think about half my pain is gone. Now I can focus on my joint pain and get back into PT. Just knowing a diagnosis can really help with how you think about pain. For me, I need to know the location of pain, then it makes sense in my brain and I am able to understand how my pain radiates. As long as my pain is low, I am pretty good at meditating through it, accepting it, feeling it flow into different area, noting how it changes everyday. But pinched nerve pain? What an ugly thorn that was!
Friday, March 7, 2014
I decided to postpone seeing Dr. Downer this month. I had an x-ray done locally and it was sent to him. I don't really know why I have to see him so often. The last time I had to spend $600 on the trip up there and he saw me for 5 min. and watched me take a few steps. I am deciding to wait until late April when I will be walking and more rehabilitated, that way my surgeon can really assess me at a more advanced stage and if I still struggle with pain and sitting he can't just say "oh well you are still healing."
I am walking fairly normal. I just get so exhausted. I don't think I could walk free around my block, but I am using my cane more and I am happy to ditch the crutch. I just use it for stairs, but I think I'm gonna try stairs with the cane soon. What a strange thing to be in such a transitional period.
I can almost sit cross-legged on the floor. This is a big dream of mine. To sit cross legged comfortably, what bliss. I am sitting better, but still have a lot of flare ups, pain, swelling, sleepless nights. I think acupuncture and PT combined will work wonders. I have patience...
I can't wait to get out of this apt! I have been so stuck here day after day. We are planning to take a little vacation at the beach for a week or so. Bringing kitty too. I need a change of scenery. I am going to bring my lawn chair and sit in the sand and watch David explore tide pools. I wonder if I can walk in the sand? I guess I will find out..
Sunday, February 23, 2014
Stretching hurts. Holding a stretch for 20 seconds hurts. But it is absolutely necessary. I am starting to do standing PT exercises instead of laying in bed. I love using my stationary bike. I do about 10min 3X a day. I think I can start doing it for 15 min at a time now.
I can hobble/step across the room. I am working to keep my legs straight and even weight, but I can't help limping. The limp is getting better, I think in a few weeks it will be gone. I start pool therapy this week, geez finally what took so long? Insurance. I will also be using a treadmill for the first time.
I will be all on my own for the next two weeks. My bf is out of town and I can take care of myself now. He helped me stock the pantry and kitty food, we have an emergency plan, I have all my medical transportation lined up for this weeks outings: Xray, PT, Acupuncture, Primary Doctor...
I finally found an acupuncture clinic that accepts my insurance, which is the worst insurance to have if you need or will need a PAO and follow-ups. I really want them to stick some needles in my right psoas illium area, please! It has been achy, tight, sore, inflamed and uncomfortable going on 5 yrs now.
I feel really good. I am glad to have my own space for reflection. Looks like I will be walking for the first time with no witnesses, just me, maybe my PT, I will walk for me, go me!
Thursday, February 13, 2014
I am very happy with getting to this point. For Valentines I am celebrating my 3 month mark by going out to dinner with friends. It will be my first outing with friends. I don't know if I will be able to pull it off because I will have to actually sit. I plan to bring an extra pillow to sit on. At home I can sit about 15 minutes before my ilio-psoas flares up. I will have to bring this up to my PT.
My insurance approved 6 sessions of PT! It's better than nothing and I look forward to working more intensely and starting pool therapy. I will be full weight in one more week.
My pain is pretty low besides the psoas muscle. The other thing I really notice is that the more weight I put on my op leg, my right foot muscles tense and cramp up pretty bad. I'm sure this is normal but wow it hurts. It goes away when I sit/lay down.
My bf is going to be out of town for a couple of weeks soon. This will be the first time I will be on my own and have to take care of myself and the cat. I don't have a car or drive. I hope a friend will help me grocery shop, but I plan to get my cupboards stocked good. I just have to be very careful when I go down my 35 stairs to the outside for PT. I plan to write my apartment manager and ask him to install an outgoing mailbox. My bf has to walk down the street to mail stuff and I just won't be able to walk that far.
I have to cancel my Seattle trip to see Dr. Downer because my bf won't be here. I hope they are ok with me just sending them an x-ray done locally. Besides, I could save my money. It's not like my surgeon does any tests or anything, he just looks at the xray and will look at me walk funny. I will just go later once I am full weight and walking for awhile.
Friday, February 7, 2014
I am still waiting on my insurance to see if they will cover my PT and pool therapy. Oregon insurance is crazy slow this year, I may have to wait another 2 weeks for an answer. However, I did find a PT place that is donating 4 pool sessions to me (for $10 a session). I was going to have my first pool therapy experience yesterday! BUT they cancelled on me and it started to SNOW in Portland which is rare so the whole city is kinda shut down!
The snow is beautiful out my window. Of course I will be stuck indoors until it melts away. I just won't risk slipping outside.
Im working on embroidery and finished my bicycle. It was very detailed and took some time! I want to build up a collection so maybe I can put them in a cafe gallery somewhere.
I got rid of the high boy. I don't use the walker anymore. I got rid of the shower chair because it just didnt fit well into our bathtub and I am able to get in and out of the bath using a crutch.
I am still Very atrophied in my op leg. When I use the stationary bike I can feel my op leg muscles working so much harder than my good leg. I am just starting to stretch my body and it needs it! Oh and it hurts! My calf muscle is painfully tight and my thigh. I need a good massage!
My emotional state has been super positive! I am keeping active with my art. I am feeling more independent and can help my bf with some chores like folding laundry. He thinks I can start doing dishes, but I think I need more time off :)
I just sent my application for the second round of supplemental social security. It will be months before I hear back. I am only requesting financial benefits for the period of time I was disabled. From when I quit my job because of the high pain, not being able to sit anymore, up to surgery and however long it takes to heal and get back to work.
I am not going back to work. I decided to start online school to get certified as an activities director's assistant for elderly people with dementia. It's my passion and I need to get paid more. This whole PAO experience has taught me that I really do have the patience and compassion to work with elderly clients.
I bought my first piece of furniture ever! I small recliner for $300 which is a lot for me to spend on anything. Its firm, yet comfortable, good back support, good ankle support. I really needed it. Sitting in a lawn chair was crazy and painful. Next is getting a new mattress, but I dont have the funds yet...
Thursday, January 30, 2014
I am just starting to use one crutch around the house. It is awkward, but do-able! I didn't think I would be able to do it at all. And after a week, my op leg is noticeably stronger, more flexible, it almost feels like I could walk unaided, but I cannot. I tried to take an unaided step and my leg just collapses.
I will have my first pool session next week I can't wait. I was able to get 4 sessions donated to me. My PT of choice is still working on getting my insurance to accept me. I have to wait as long as 2 weeks to find out. I really need PT now people.
I will see Dr. Downer at the end of February so he can look at an xray and see me walk. Im not that excited about it because it cost me about 500 to see him in Seattle, renting a car, staying in a motel, paying for an xray, gas, Id much rather use that money to pay for PT that I prob wont get.
I baked my first cake a few days ago. I used one crutch so I had a free arm and made a vegan coffee cake from scratch. It was exhausting, but I really wanted to do something nice for my wonderful boyfriend who has done such a great job taking care of me. Im so lucky!
I have taken the bus a few times. Sometimes the bus is so crowded, but as soon as I get on with my crutches, people always give me a front seat. Im trying to take advantage of this! I went to a movie again and was fairly comfortable sitting. As long as a seat is low to the ground I can handle it.
Im working on a really cool embroidered bicycle...
Saturday, January 18, 2014
I had a PT evaluation that is being sent to my insurance. My PT says I still have good flexibility, it will be all about strength training and I hope to to pool therapy. Ive been doing home PT for 3 days now and actually Im not too sore/achy. My energy levels are increasing.
I can do lots more stuff now. I can dress myself, all except my rt. sock! My bf still has "one sock duty" I just can't reach my foot. My walker basket changed my life. I can cook simple things for myself and put my clothes away and feel like im helping around the house.
The big miracle news is I think I CAN SIT! Like in a chair! 90 degree angle. It feels soo good. Its been exactly one year since I last was able to sit, and even then my pain was insane. I actually took the bus and went to see a movie! I did pretty well, leaned the crutches against a wall. The theater seat was a little high and uncomfortable, but afterwards I was still pain free. This is a huge deal for me. Even my surgeon couldn't tell me if I'd sit normally again. I feel elated. Im getting rid of this electric bed soon and I'm in the market for a new recliner. The next amazing trick would be if I could sit cross legged or sit on the floor cross legged, I dream about that day..
Im doing an art project where I will embroider things I once loved to do, but that my hip took away from me. I was a drummer for 9 years. I really miss it. This year I am determined to get back into it, sitting, kicking the pedal and all. My next embroidery image will be a bicycle...
Monday, January 13, 2014
I saw the surgeon and my x-ray is looking like the bones are healing well. He told me I could start walking with my foot flat on the ground to mimic walking with about 30 lbs pressure. I brought my walker with me. He told me to increase my weight on op leg every 2 weeks. This week its 25%, then 50%, then 75%. In 6 weeks I should be full weight bearing. When I get to 50% I can try to use just one crutch. I have to see him again in 6 weeks. Sheesh it is costly. But my bf is getting a car soon so that will save money.
He wants me to start aquatic therapy which I am trying to do through insurance, but I know it will be a battle. I can start using my home stationary bike. It's funny because as soon as he told me I could move around and stretch and put pressure on my leg, I feel great. My pain has been low, the car ride felt fine. And I have been sitting!!! I havn't sat in over a year, I can't believe it. So, something has been fixed. Today I went to get a haircut and sat 15 minutes, pain free. My biggest struggle since surgery was the purple/red blotchy itchy leg thing. Downer says it usually happens with thin people, something to do with the artery. It was really keeping me from moving around and standing up. But these last few days it hasn't bothered me.
I feel like I am getting my energy back. I am using my crutches and can go down my 35 stairs to the outside. My arms are getting stronger. My op leg feels better, I have more muscle control and strength. I feel like a spell has been broken.
I decided to pay for a PT evaluation this week. I figured the more crippled I am, the more the PT will recommend therapy and more sessions. I really want to get into the pool. I found another aquatic therapy place that will give you 4 free pool sessions if your insurance doesnt cover it.
Biggest issue with my insurance: My dysplasia diagnosis is not covered, probably because it is vague. And the PAO surgery code is unlisted. I really thought there would be no question I need therapy, so I can maybe learn how to walk again. I hope it works out.
I ordered a basket for my walker and a grabber bar. It really opens up the possibilities! My poor bf was having to do every little thing for me and I couldn't even get a glass of water or feed the cat. Now I am a little more independent. Tonight he left to go to a classical music show and im fine here all by myself.
My scar is looking good. I bought some bio-oil and use it twice a day. It has helped to flatten the scar.
Yesterday was my first public outing. We went to Costco to get a huge bag of organic edamame, worth it. I used an electric cart for the first time and put my crutches in it. People were nice to me and stayed out of my way. It felt good just to see people. We went to the fabric store afterwards and I used my crutches. It was hard work, but I felt strong and capable. Im always worried about fainting as I faint easily, but I was fine. Im so proud of myself.
Wednesday, January 1, 2014
I have this awesome lawn chair that I can lay in. Sitting is still an issue for me, but it is getting better. I can tell my muscle is healing, the one they surgically cut and my bones aren't so clunky anymore. My op leg still gets blotchy, red and itchy, but it is tolerable and I am moving around more for better circulation.
Next week will be my 2nd post-op appt with Dr. Downer in Seattle. I will be able to start weight bearing, 25% and I hope to do pool therapy soon, I am very restless!
My pain has been low. Really, the only issue that bothers me is the blotchy itchy leg thing when I stand up. If that went away then I would be up and about much more. Even though I can use my stairs, im not going to do them too much. My surgeon doesn't want me to risk falling.
I am experimenting with leg positions. I can bend my knee, but it's very weak and pulls on the healing cut muscle. I can lift my leg about a foot off the ground. I can sleep on my op side, but after an hour it gets very sore. I can sit on my shower chair about 15 minutes. I can sit in a recliner about 15 minutes (it has a firm, hard surface so the pressure on my joint can be uncomfortable.) I still use my electric bed. I use the walker inside my apt and my crutches in our apt building hallways.
My boyfriend does a lot for me and never complains, but I can tell he is getting caregiver burnout. I try not to keep asking for things and pointing out the things he should do, this is hard! Plus, I am a super crafty person, so he has to bring me crafty stuff and put stuff away constantly. I am very grateful he loves to cook. We have been eating so well. Lots of veggies, grains, fruits, tempeh. I can tell my body is burning calories from the healing process.
My main concern is loss of muscle... My op leg is jello. My calf muscles and rt. thigh have lost all tone. It has been a little emotional for me. I do not like the feeling of wasting away. PT is going to be central in my life. I feel a little embarrassed about the state of my body. I feel so old...
I am so happy and relieved 2013 is over. I needed a fresh start. Im happy surgery is behind me. This is the last year of my twenties and I feel such desire and empowerment in healing my body and taking a new direction in life. I think sitting still, healing, planning, daydreaming have been very humbling for me. Its ok that my friends don't understand what I am going through. It's ok that others are able to run marathons and do yoga and play sports. I am ok with slowing down and really appreciating things.