Training Has Begun

Having a compromised immune system in addition to everything else is a bunch of bull, if you ask me. Apparently I had forgotten that it's not just my muscles and joints that I have to be mindful of while training up ye 'ol body to do the 3-day... Apparently some internal organs are out of shape too. I already knew my heart was a little on the fritz, but I forgot my lungs would be working out too.

I have some kind of bronchial flare-up at the moment, and it's pissing me off. I've never had asthma before, so I'm not sure it's that... but I just keep coughing and can't seem to take a deep breath.

I love that I get one part of my body slightly under control (I use the term "slightly" loosely - I've managed to roll my ankle twice and popped my knee out Saturday night) and another part goes boink. But I'm going to try really really hard not to get discouraged and frustrated and beat myself up over something I can't control. All I can do is keep on keeping on.

I stumbled upon a quote from Gilda Radner that I'm trying to keep as my focus...

"Some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity..."

I've never been a fan of ambiguity. I like plans... structure... But lately I've been digging the idea of just letting it all go. Of just letting myself LET GO and just BE for a little while. We've talked about it in therapy, about me going away for the weekend and just "being" without anyone to bother me - to let me just have some time to regroup, refocus...

I want it. I want the space, the lack of responsibility other than for my immediate person, a chance to just rest and figure this shit out.

Pity Party, Table for One Please

I used to be passionate about 4 main things in life:

1) Eating tasty food
2) Massage (giving, not receiving)
3) Sex
4) Horses

As of today, I can manage only 1/2 of one of those 4 things. Last night I dislocated my jaw. I won't get into specifics, as this isn't that kind of blog, but yeah, jaw is a wreck today because of it. If I wasn't feeling lost before, well I definitely am now!! I was once a very sexual being - I like sex (who doesn't???) and I used to be really good at it. Now I just feel broken and useless. My "usefulness" as a woman is being stripped from me, and that is heart breaking. I have been told not to have any more children for fear of either myself or the child not making it out unscathed (or alive) in the end... To have that taken away was a very hard blow. But now, to have the fun part taken away piece by piece too??

Is this a lesson, God? Are you trying to teach me to let go of control? Am I supposed to be like  Job and lose everything I have and am to prove my faithfulness to you?? Or is this something else? A not so gentle shove in my life path of which direction I am supposed to go? If that's the case, Lord, could you take the blinders off first so I can see where I'm headed, as right now it just feels like I'm being shoved off a cliff...

Seriously??

Dislocated a toe tonight. That was NOT fun. Apparently my body didn't get the memo that we are only blowing out one body part at a time. That was really annoying. Taped the toe to the next one over for stability. Perhaps I should look into toe splints too as my toes tend to bend over backwards...

And now I'm going to bed.

Annoyed...

Falling Apart... Again

Todays therapy did not go well. Tendon is subluxing again which would lead one to believe the internal tissues that the synthetic tendon sheath were adheared to are too unstable to hold. The wrist is crunching again and I'm trying so hard not to fall apart emotionally too.

I'm disappointed.

I'm in pain.

I don't understand what the hell is happening to me.

To top it off? My right wrist is starting to hurt too. I'm feeling useless and broken. I haven't been really helping out at home. Granted, I'm technically not supposed to... but I've been sticking to it as I'm physically unable.

I'm getting frustrated with being in pain all the time. Its starting to affect my relationships with people. I'm typically a very quiet person when it comes to my personal life. At times, getting me to open up and share is like pulling teeth. But lately, I feel myself withdrawing from everyone. I guess I'm tired of people asking "how's the hand?" and me not having anything positive to say. When people ask, they don't want to hear anything other than "things are going great!" I admitted things were not going well to a patient at work the other day and the look of pity she gave me...

I don't want anyone to pity this shit I've been dealt. I do that enough for myself, thank you very much.

Tonight is a rough night for Keeping It Together...

Ooo! Pretty!

Well, my cast came off this morning. I forget how painful moving joints post-op after they have been immobilized is! Yeeouch! I'm taking it easy until I can get in to see an occupational therapist. And now that the cast is off, I can schedule my physical therapy too. I see the rheumatologist again on the 24th of October, so I'll probaby get lab results and what not then.

So here's my wrist post op... the incisions really arent bad and they will heal up lovely!

back of wrist: tendon repair and scope

palm of hand: nerve release

I still have zero feeling in my armpit from the nerve block and pain pump, but that may (or may not) come back in its own sweet time.

My hand looks so skinny in that picture... LOL! Gotta love atrophe!

Joint Insta-what-now?

Ok, here's the low-down on me.

I'm 32 years old, female, 176lbs, have 2 small children, an annoying husband and we eat like crap. I know, not exactly "healthy." I've been battling dislocating body parts since I was 11. Mostly it's my kneecaps that blow, but I had my left knee reconstructed back in 2003. My hands and fingers are hypermobile as well. All was well until 2007. That is when I had my first baby and all hell broke loose. I essentially undid my surgery with all the fun pregnancy hormones that make your connective tissues go wonky (relaxin, to be more specific). Then in 2009 I had another baby. 18 months apart. WHEW! More wreckage as now I have diastasis too (seperation of the abdominal wall, giving me that always pregnant appearance. HOT).

In 2010 I started to notice something wasn't "right." Moreso than just my wonky joints. I was tired. REEEEEEEEEEALLY tired. All the time. I went to an internist. He thought I might have sleep apnea and sent me to a pulmonologist. Then that jerk of a doctor said "Um, maybe you're tired because you have 2 small children at home..." Gee, thanks. So I let it go.

February 29, 2012. I dislocated my forearm and part of my hand... by taking towels out of the dryer. Clearly this was bad news... Went to an orthopaedic and was put in a cast for 8 weeks. Cast came off and... hmm... somethings wrong with my hand. Sent to a hand specialist! She schedules me for surgery and strongly urges me to see a rheumatologist. I heed her advice and one week after my hand surgery, I am in to see the rheum. He is the one who hands me the mystery diagnosis of Joint Instability Syndrome. Oh, I also have Fibromyalgia to boot. Not to mention having an abnormal ANA blood test, so I just got all my labwork done yesterday to rule out Lupus. I'll keep ya updated when those results are in. Also had an echocardiogram to make sure whatever is causing my connective tissues to be "wispy" isnt doing the same crap to my heart.

Piece of cake, right? Shit...

What's In A Name?

Picking a name for a blog is like naming a kid... You want it to be profound, to be unique, to be "just right" in capturing your hopes and dreams and putting forth the message you want to be heard, loved, accepted.

Keeping It Together.

Yep. It's completely on point. Keeping It Together is exactly what I'm trying to do right now. You see, dear reader, I have recently been diagnosed with Joint Instability Syndrome - thus the swanky "jointinstability.blogspot" web address. I'm literally trying to keep my body parts from falling off.

So what exactly IS Joint Instability Syndrome?

Hell if I know! But this blog will be my online playground where I plan to collect all the little tidbits I can about this oddity, and YOU get to come along for the ride! Or, if you've stumbled across this blog as you too have been diagnosed with JIS, welcome to the party! Hopefully what I learn and share may someday help someone else who is feeling lost, confused, afraid, and utterly alone too.