Sunday, November 06, 2016

Hip Replacement at 40?

Hi.  I know its been a while.  I know I said my goodbyes.  But I'm headed to a new hip doctor tomorrow to look at my latest Arthrogram results on my other hip - the non-PAO'd hip - old lefty. Torn labrum, moderate to severe cartilage loss, synovitis, subchondral cysts - it doesn't sound good. Maybe I should reboot this site after all?

Saturday, July 14, 2012

Two Year Check In and Goodbyes

Well, its been another two years and the diagnosis has changed.  I have Ehlers-Danlos syndrome, hypermobility type, aka HEDS, aka EDS-III.  That's why my surgery has been less than successful (the operated hip started subluxing again) and that's why most of my joints are now involved.  Apparently, the hips were just the first to go!

Anyhoo, I'm keeping this blog around, but I don't check it and I likely won't be keeping up with it.  That doesn't mean I'm deleting it though.  Back in 2004-2005 when the hip dysplasia thing was just happening to me, I would've killed for more information, even a quiet blog.  There was only one out there at the time, an old live journal account a woman kept and that saved my sanity.  Now its amazing!  Hip dysplasia resources and blogs are EVERYWHERE.  So you don't need me anymore, especially considering that my case is now known to be a bit on the unusual side.

If you still want to find me, I blog about life stuff at likelystory.wordpress.com.  Mostly recipes, crafty projects, the occasional health issue *cough* EDS *cough* and my dog.  Otherwise, take care all of you!  xoxo

Tuesday, March 09, 2010

Hypermobility Syndrome Anyone?

Holy Crap - I'm Hyper Mobile!

So, I have had increasing joint pain and joint stiffness in the last few years, as many of you hip folks know. What's been odd is that its not just in my hips anymore. Its my knees, my shoulders and elbows, even my fingers. Its also been coupled with fatigue, difficulty sleeping, headaches and muscle pain. So I was finally sent to a rheumotologist. She took one look at me and had me do a couple of my neat double jointed tricks (I can basically tie my fingers in knots, my knees practically bend backwards, as do my elbows, my feet can twist almost backwards, etc. etc.) and said that I was hypermobile. Hypermobility Syndrome to be specific.

Now she didn't act like that could be the cause of any of my troubles and told me to avoid yoga at all costs (too late) and that she'd keep testing me for the real cause of my problems (like RA or Lupus, both of which I test negative for). But here's the deal....I started looking up Hypermobility Syndrome and it can cause ALMOST ALL OF MY SYMPTOMS!!!

And I'm thinking that should include my lingering hip pain. I've asked my OS about that and he said my hip is perfectly positioned and he sees no reason for my hip pain and what if he's right? What if there is no Hip Dysplasia related pain left in my pao'd hip but it's HYPERMOBILITY PAIN? Eh?

What about that??? Any of you other Hipsters out there Hyper Mobile? Let me know!!

Now if you'll excuse me, I must begin my lengthy research into the topic of hyper mobility.

Tuesday, June 30, 2009

Wow - Two Years?

So its been a while since my last post. I thought I'd share what's been going on.

I finished culinary school. I worked for about a year as a part time pastry cook (full time was too hard on the hips). After a year I realized that my hips were going to break and crumble into dust, or so it felt, if I continued with the pastry work. And after some swallowing of pride and bitter pills (figuratively, of course), I decided to do some searching and find another avenue, career, path, etc.

In May I finished my first semester of grad school for my Masters of Library and Information Science. Library work has always been something that interested me and you can't walk in our house for books, so it seemed a natural fit. I love it. I even started volunteering at the local library 2 days a week.

But the hips kept getting worse, especially in the last 6 months or so. Oh, and I've lost my health insurance again! I will be getting it back in the fall through school, but it will be less then great quality coverage. Anyhoo, I've been wanting to exercise for soooo long now (years) but everything I tried hurt the hips. Elliptical machine? No way! Stationary Bike? Eh-Eh. Well, I finally sucked it up and decided that I must force myself to drive to the town rec center 3-4 times per week and swim.

Oh My God! Swimming RULES! I take aqua aerobics (with the septuagenarians) twice a week and I swim laps the other days and it feels amazing. If anyone out there lives with any sort of chronic joint pain, I say, "Get Thee To A Pool!!!" Even just standing in the water reminds us of what it was like *before* the pain. I am pain free in the pool. I am graceful and lithe and I swim like a fish. Its wonderful. And when I am not in the pool, the hips are better, less achey, more durable. This gives me hope. I like hope!

So I say to all of you hipsters out there - GET WET!

Friday, June 29, 2007

What's The Deal With Lefty?

So, my left hip....she's tricky.

Doc said that while my right hip needed to be corrected by about 20 degrees, old lefty only needs, at best, a 10 degree correction. Doc said that he'd rather not do a 10 degree PAO unless it's absolutely necessary. But he did say I was welcome to have an Arthrogram/MRI - gee, really? Thanks! Basically, I am back to the beginning. Doc says I should wait it out until I can't take the pain in my left side anymore. Then we'll go for the PAO.

I suppose it could be worse.

The sick thing is that I was kind of looking forward to having another PAO. Not the surgery/recovery, but the finality of it. The knowing that this is it. All finished!

Oh well, it's a waiting game for all of us, isn't it? This life thing....I guess it's what we do while we're waiting that counts. Me? I'm still going to insist on finishing culinary school and despite what anyone thinks, I will be a pastry chef. While I wait.

I suggest you do what ever it is you fancy while you wait.

Wednesday, May 23, 2007

Never Ending Cycle

Let's just say the other hip's gone sour and leave it at that.

Seeing the OS on 6/5/07. I'll know more then.

Looks like I might be doing this all over again.

Argh!

Sunday, December 31, 2006

Updates

I just wanted to say thank you to everyone who has been reading all along. I know what you're going through is hard, but hang in there! The surgery was totally worth it. I just had my official 6 month, post-op check up a few weeks ago and my surgeon said I could finally start my professional wrestling career! In other words, I am totally, rock solidly healed. The pesky soreness on the op side was a touch of bursitis, which has resolved itself with lots of stretching. Also, my "New Bad Hip" has stopped bothering me! We know that eventually, it will have to be PAO'd, but I hope to put that off for at least 5 years while I get on with my life.

Stay strong everyone! I know it seems like recovery will never end, but eventually, it does!