Friday, July 26, 2013

Hip injection woes

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, July 12, 2013

seam rip my hip

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Today I embroidered a cat

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

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

Thursday, July 4, 2013

a stitch in time

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

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

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

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

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

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

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