July 1, 2016

According to the Social Security Administration, the date that I "allegedly" became disabled is July 1, 2016. Well, on my second application anyways.

I had a meeting this morning at SSA where they reviewed my application and asked questions to amend it, so it would make the most sense. Like, why did I go back to work full time after I filed (and was denied) Social Security Disability Benefits in 2014? Well, the government declared I wasn't disabled, and since I "had another hand" I could work in a different field. So I tried. I tried and it didn't quite work out. So in July of 2016 it became evident that I couldn't work full time anymore.

This particular interview was just about my work history and what it is exactly that I do. When I asked about the medical stuff, my case worker said that it would all be reviewed in the next 30 - 60 days, and that they would mail me a letter of determination. She said it can take as long as 6 months if they have a hard time collecting medical records or verifying my employment. I completed all the information online, but there really wasn't a place for me to explain what it is like to live with Ehlers Danlos. All I can put down are the symptoms: chronic dislocations, hypermobility of my joints, fibromyalgic pain, chronic fatigue... But that isn't what living with this is like.

It's waking up every morning and doing a quick assessment to see what may have slipped out of place while I slept, and figuring out how to pop it back before pain registers. Its having to think about every step I take - willing my body to stay put together, concentrating with each step "ankles in, knees in, don't hyper extend, don't roll." Lather, rinse, repeat. It's looking at a basket of laundry and having to guess how much it weighs, and how likely it will be to sublux my wrist and fingers just by picking it up. It's tensing up every time I am near a dog who jumps up, or has a tail or body right at knee level - even when it's my own dog. It's having to explain to nosey clients, cashiers, complete fucking strangers on the street why I have ring splints all over my fingers, and why my hand looks kinda funny. It's having to make sure I don't wack an already broken fused wrist on tables, walls, chairs, doorways because my brain still registers that hand as functional and I literally forget that I can't bend it out of the way and I'm left not only feeling pain, but feeling stupid for not knowing better. Its waking up with tendonitis in my right hand/wrist and not knowing if today is the day that my other hand is going to fall off... That I will no longer be able to type, to drive, to cut my own fucking food...

So I'm a little frustrated today. With the process. With my body. With the unknown variable of what my body will do next to fail me. I never know what is coming, and that is really scary and frustrating sometimes.

May is Ehlers Danlos awareness month... Yay?

I just feel very small and alone in this moment. I'm running out of options and I'm trying to figure out how to provide for myself and my family. It's possible I may not qualify for anything because I'm still married, and that sucks too.

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On a different note, but also somewhat frustrating... I made a couple more fluid paintings yesterday. They were both quite interesting to me, and apparently they gained the attention of my mother. She knows the process. She knows they take weeks to dry. So why she felt compelled to fucking touch one of them and drag her finger down the middle of it is beyond me. It wasn't just a little smudge in the corner... She dragged her finger across it. She admitted to me when I got back from my appointment that she couldn't help herself and she "touched it because it was so pretty..." but it's wet fucking paint... I resisted the urge to snap at her to keep her fingers out of my creative processes, that she had no right to touch it, and she does NOT have permission to meddle in things concerning me. Those thoughts raced through my mind... But I looked at her face, her body language - she looked genuinely sad and embarrassed and I told her I was a little annoyed, but perhaps she should just refrain from touching the canvases without asking first. She said that was fair... and that she was expecting me to be mad.

"Well, you did just single handedly ruin my budding art career, but I'm sure I'll figure something else out since it's now over forever and I'm never going to make another one of these things ever again..."

I laughed it off and she stopped holding her breath. I think she was expecting a similar explosion to the ones I have been dishing out to my father lately.

Not today, Mom. I'm too tired. 

Post Op Appt

Just got in from my latest post op appointment with Dr Rohde. Have I mentioned how much I like her? Cuz I do. She gets my weird humor and gives it to me straight. My kinda Doctor!

Today I actually asked if I could have copies of my xrays and asked if I had her permission to use her name in this little blog o' mine. She gave an enthusiastic "yes!" and even asked for the URL. So if you're reading, Doc, "hi!"

It was a pretty straight forward appointment. Cast cut off, arm xrayed, follow up with the doctor. Its not quite where she wants to see it, so the cast is ace bandaged back on until I can get it splinted. She had suggested using one of my old ones... but they all have a bend in the wrist, and I no longer do. So custom splint it is!

I popped over to hands/OT after my appointment and gave them my script and scheduled my appointment for tomorrow. Then I will be FREE from this cast! YIPPEE!!!!

So progress is being made and I'm a happier camper than I was the other day. Pain still sucks, but it's gradually getting better.

Here's my show and tell moment!

Alrighty, first set of x-rays are pre-op (before my surgery). I was nice and put the left on the left side, and the right on the right side. SO! The right side is a fairly normal/healthy wrist. The left side is pretty jacked up. From the side you can see how my metatarsals (hand bones) are not lined up with my radius and ulna (forearm bones). There is a definite disconnect when you compare them side by side.

The dysfunction is even more obvious looking from the top down. Look at my right hand. You can see all my little carpals (wrist bones) lined up nice and pretty. Then look at the left - they are all over the place! Some are even up on top of the others! Definitely not quite right...

And here we have it... The postop (after surgery) final product. This is my wrist. My hardware. My plate and 8 screws. My hand is crazy atrophied (where the muscle shrinks away from disuse), so it is super skinny. My middle finger metatarsal is also slightly crooked to the left, so it gives my hand a slight bend to the outside... but I suspect as I build the muscle back up in my hand, it will flesh out and not be so noticeable.

There you have it, folks. I'll post pics tomorrow if my splint is finished.

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...

Silver Ring Splints

Someone got a Christmas present early... My silver ring splints arrived!! We somehow managed to miss ordering my left thump DIP joint, so that one has been re-ordered... but the rest are in my possession and on my fingers. I'm typing with them on RIGHT NOW. And I have to be honest... My fingers feel AMAZING. I cried at OT today as I zipped up my jacket to leave - I could actually zip up my jacket without any knuckles buckling. They didn't hurt. It was AMAZING. I feel so blessed to have these tools!!

Now to that I feared would be the tricky part... I needed to figure out a way to store them when I have to take them off! There are currently 17 of them (soon to be 18) and they are all different sizes. Well, technically 3 of them are the same size, but I just have to learn/memorize who goes on what joint! So I mentioned this to hubby and he suggested something really quite helpful! He went out and purchased a foam core block that has sections that punch out - it's originally used for storing miniatures - but it worked out just great for the rings! I punched out individual homes for each ring, and there was enough room left over to also create spots for my wrist brace and both thumb braces. Yay!!

And now, for some pictures!

What they look like from underneath:

 

Fingers all braced up and ready to go:



 My fingers look really really swollen in this picture:

Storage container, with all rings and braces inside:

 

Silver rings looking all sparkley and pretty:





Finger Splints pt II

Got the rest of my knuckles measured for my finger splints. Now the battle begins to get them ordered/paid for by my insurance company. I have a back up plan if that doesnt work out, but I would rather not go down that road. So fingers gently crossed for insurance coverage. Orthopaed is 100% in support of the splints and said she will write the prescription for them. I may have picture updates in a couple weeks of my newly splinted fingers!

She has also given me the recommendation of a couple other rheumatologists whom she feels would be more appropriate. One of which is the same name that my moms PCP recommended (the same PCP I'm meeting with on tuesday!). I'll give this new guy a call and see what he says. Hoping he's more supportive and less of a shit than the last one.

Told both the PT and the ladies in OT about my verbal boxing match with poopy-rheum. They were all so proud of me for speaking up and not settling. I'm pretty proud of me too. :)



I also talked with the PT a bit today about the different types of Ehlers Danlos. She suspects I may have type I or type II, in addition to hypermobility type, but as she's not an MD, she can't diagnose me (which I knew, its just been nice to pick someone elses brain who knows a lot about it!). I think I'll do a couple posts on just the different types, just for knowledge sake.

This Circus Needs a Ring Leader!

I mean that in all seriousness - the circus that is my current medical condition needs a ring leader - someone who can keep track of all the different specialists I'm seeing, open the lines of communication a little better and be able to point me in the right direction with what to do next.

A General Practitioner.

I don't have a home base to go to inbetween specialists. Someone who can really do the research for me and figure out the next best thing to try. I have essentially been acting as my own ring leader and quite frankly that shit is exhausting. I have a hard enough time scheduling all these appointments with physical therapy, occupational therapy, orthopaedic surgeons and rheumatologists... But now that I'm feeling a little stumped (and annoyed as hell), I'm not sure where to go next.

Hypermobility can be really frustrating. Some doctors will just claim there is nothing wrong with you, others will tell you it's just an inconvenience... I need to find someone who will actually LISTEN and then WORK WITH ME to connect the dots.

I'm going to call the rheumatologist right now and see what he says about getting a second opinion.

I will not settle for "I can't help you" anymore.

Physical Therapy

Met with my new physical therapist... and I couldn't be happier. She confirmed my hypermobility in my fingers, wrists, elbows, shoulders, knees, and ankles. She asked me questions that no one ever had that made complete sense. I nearly burst into tears at the end of our evaluation and thanked her for getting it - for not treating me like a hypochondriac and understanding my body. She smiled and nodded and said "I get it. I know how frustrating hypermobility diseases are. Thats why I'm here to help."

She was wearing these beautiful finger splints. As I'm typing, my hand is actually hurting and I'm watching my fingers buckle over backwards. I will ask her for her opinion on finger splints and see if they help her - and if she thinks they may benefit me...

Productive introduction. I'm thinking I'm on the right track here.

She recommended getting a referral to a geneticist. She doesnt want me to accept "joint instability syndrome" as my diagnosis. "So there is a hypermobility syndrome... but which one?" I hadnt even thought of that. So I want to ask the rheumatologist about testing for EDS. I will give them a call in the morning.

Feeling pretty positive. :)

Starting MORE Therapy (and a bit of an JIS rant)

So while I was at the Rheumatologist last week, he asks "have you started your physical therapy yet?" No. I had just had surgery on my hand and was waiting to get that under control before I started additional therapies. "Ok, well I want you to start. Here's another script for pool therapy. And the flexiril isn't doing anything? Here's a script for a new anti-spasmatic medication..." Took the new meds last night (1/2 a pill as he suggested to start) and I didn't really notice a difference. BUT, it's the first night, I froze my tush off on the couch and I was lamenting the Tiger's losing the World Series. I'm not throwing my hands up in defeat that I will never sleep again just yet.

After my OT today, I swung by the physical therapy office and asked to make an appointment to get my pool therapy rolling. They were very accomedating with my OT schedule and the stars alligned just right as the therapist who will be treating me actually specializes in connective tissue disorders and has JIS herself. I am hopeful that this will give her the best insight as to how to help me. A little voice in the back of my head is chirping "beware!" as one of the draw backs to finding someone else with a rare ailment (unfortunately) becomes a competative pissing match of who's case is more severe and who has the biggest right to bitch and complain. It happens all the time, ESPECIALLY with a group of women. That very reason is why I tend to internalize my shit - especially my medical issues - as nothing is more heartbreaking than having your fears and frustrations completely invalidated by a complete stranger by saying "Why are you complaining? My case is soooo much worse!"

Is it slightly ridiculous that my brain immediately goes on the defensive that I've actually potentially found someone else that suffers from the same shit as me? Ridiculous. I should be rejoicing! In reality, I despise not really understanding what is happening to my body. It's my body, I know it better than anyone. But even with the reseach I've been doing, the resources just aren't there to help me grasp the "why" because, quite frankly, no one knows. I get it, there isn't a dedicated association for this disorder like there is for Lupus, Fibromyalgia, and the other heavy hitters of the connective tissue disorder world. Why? One simple reason - it isn't terminal. Not in the immediate sense. It's more of an "inconvenience" type of disease. "Oh, your body parts pop out of the socket? That's inconvenient." "Oh, your connective tissues are falling apart and there isn't a really valid reason why? That's inconvenient." See what I mean? Echo came back clear, so for now my heart is uneffected. GOOD. So now what can I do to "uneffect" the rest of my body??

We shall have to see what the new jiggley joint therapist says!

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...

Pushed Too Hard?

Had my 5th session of OT on friday. It did not go well. I had pushed myself pretty hard the day before with my home exercises and was pretty sore. Get into OT and my wrist was very stiff and swollen. The therapist starts to do a gentle stretch and...

*POP*

We both froze. I looked at her. She looked at me. Neither of use moved a muscle for a good 3 hard seconds. I swollowed. Hard. It started to hurt. She backed off the therapy for the day and taped my wrist. Told me to take a break from home exercise and just rest my hand/wrist the rest of the weekend.

"The tendon slipping has me concerned... I'm hoping that doesnt happen again."

Me too, lady. Me too.

I'm too depressed to say much else today. It was a bad pain day.

Wait, What Do You Mean I'm Not Super-Human??

So in my last post I mentioned a little bit about myself. One aspect was my annoying husband. So while I have been laid up with my most recent "put body parts back on" episode, I had been counting on him to step up his game around the house. Even before my surgery to get my hand put back together, I had been trying to prep him...

Me: You know, I'll be back in a cast again after my surgery... which means I won't be able to do jack. No dishes, no laundry, no changing the small boy's diapers...

Him: Yeah, sure, no problem babe. I've got this!

Here we are 3.3 weeks post-op and he clearly doesn't "got this!" The house had grown more cluttered, toys and stuff everywhere, dog hair in the corners, dishes piled in the sink, dirty wet towels on the bathroom floor... and annoying hubby comes home from work and complains about the mess, yet doesnt do anything about it. So yesterday I had had enough. I am not supposed to be using my left arm at all - so I attempted not to use it too much. The cast isnt waterproof, so that makes for a good reminder not to use it.

Let me tell you... if one handed dishwashing becomes an Olympic sport, I am headed for GOLD baby. Tho I admit, it was intensely awkward and I can only imagine comical to watch.

Kitchen? Cleaned.
Bathroom? Cleaned.

I even began sorting through childrens toys to be put away in their rooms.

I was a Domestic Goddess. A cleaning Super Hero, if you will. I was... a complete idiot.



While my family is basking in the glow of a little corner of cleanliness in the house, I am paying for it today. I hurt. My surgery arm burns like blazes and the rest of me is just sore. I over did it. I knew when I did it I would pay for it later... but I was just tired of listening to the complaining. And I know that all I did by giving in and getting it done was enable annoying hubby. Squeeky wheel gets the grease. Complain enough and bum-arm wife will do it for me.

I'm not Super-Human. Right now I don't even feel sub-human.

THIS is the hardest part of dealing with FM, JIS, and whatever auto-immune goodies I have brewing in my lab results... Not being able to do it all. I read an article about "Living with Lupus" and it did a beautiful job explaining how you only have so many spoons to spend per day. Each activity of the day takes a spoon and there are only so many to spend in a day. I'm not ready to admit I have a limited amount of spoons.

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.