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. 

Busting My Butt (In A Good Way!)

I've been pretty quiet lately - mostly because I have been completely obsessed with working out and tracking my calories. I am so determined to loose weight and get fit... and doing it the right way! :)

This week I'm down 2 lbs. I've been tracking everything and thus far I've burned 900 calories. That's this week. To say I'm proud is an understatement! I'm really working hard. My face has even started to slim down already... Thank goodness!!!



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.

I Dreamed A Dream...

I love this version. Haven't listened to it in a really long time. The meaning is so different now... living with a chronic illness that slowly takes away everything you love about life.

"I had a dream my life would be... So different from this hell I'm living..."

Its a high pain, low morale kind of day.





Then, on YouTube, while sifting through some of my favorite singers, I come across this gem:

 

Ok, first of all, Brian Stokes Mitchell is my favorite baritone (sorry Dad...) and this song really moved me to remember the bigger picture. Plus epic crescendo's always make my hair stand on end. In a good way.

 

 

Speaking of epic crescendo's, this one gets me every time too:

 



My favorite tenor of all time, Luciano Pavarotti. The final stance when he's singing guts out? He's saying "Vincero! Vincero! Vincero!" which in Italian sounds like "vini-cello." Translation?

I will be victorious.

 

 

 

 

I hear you universe... I hear you. Vincero!

Post Op - 2 weeks

Here we are, 2 weeks post op.

I'll be completely frank. This surgery SUCKED. Pain management was really an issue for the first 5 days... but everything is under control and I am completely off prescription pain medications. Yay. There were several nights tho that I really was having a hard time... I feel very lucky that I had one of my best guy friends to talk to at 3am on several occasions, otherwise I may have gone mad.

So this begins my journey of learning how to use my arm/hand all over again. Everything is going to be different on that side... Everything.

Heres a couple pictures for those who are curious. If not, scroll quick. ;)

Shortly after surgery. Very swollen and uncomfortable. 

11 days post op - bandages come off and incision is revealed. Its lovely!

Detail of incision. Internal sutures and dermabond (skin adhesive glue)

I went with a nice black cast this time... Black goes with everything and is slimming, right? ;)

As for the actual surgery... Doc said it was "jacked up" in there, and she feels 100% confident this was the best choice. I'm also her youngest wrist fusion to date. I asked if that earned me a metal... "Why yes," she said. "Its in your arm!"

Very clever... ;D

I was missing cartilage in some spots, had mutating cartilage in others... it was just a mess. Now it will be so much better!


OH! I've also started the application process for disability. No clue how that will pan out, but I gotta give it a try.

Fusion It Is

June 27th I go back under the knife, hopefully for the last time for this body part. I can't believe my surgery is only 10 days away. I'm a little excited, but mostly terrified right now. I made the mistake of researching the surgery further and watched a video of an actual procedure.

This is going to hurt so bad initially... So bad...

I'm sitting here trying not to cry at the moment. I'm just feeling so overwhelmed, yet I feel like I can't say anything to anyone. I've hinted that I'm nervous to family and friends... but this is more than just nervous. This is it. This is the absolute end of my massage career. There is no turning back after this surgery. Granted I can't do massage NOW, but with my wrist fused, I have to look at alternatives to everything going forward.

Driving (won't be so bad, I drive that way now)
Eating (will be tricky. Try cutting your food with one hand immobile at the wrist...)
Typing (until my hand is fused AND I can pronate my hand again, I'll be typing one handed.)
Showering (I HATE bathing with a garbage bag on my arm... but it is what it is.)
Grooming (since my elbow will also be immobilized during the cast process, my hair will be an absolute mess. Which reminds me... I should think about dying it next week so I don't have horrible roots right away)

I'm nervous.

One of THOSE Days

You know the ones... Where it feels like you can't do anything right and the world knows it? That you just can't quite get a handle on what exactly you're supposed to be doing at any given moment? I'm having one of those days today. And it's not because I don't know what I'm supposed to be doing - I know exactly what I should be doing. I even have a prioritized "to do" list!

I just don't want to. Any of it.

I just want to shrug off all my responsibilities and head back up north, waving my middle finger as I go. Not helping with ANYTHING, just dumping everything at everyone else's feet and saying "here, you deal with all this - I'm done for now. Oh, you don't know how to take care of this? Well guess what, I didn't either until you initially dumped it at MY feet and asked me to take care of it. Did I bitch and complain? NO. I made some phone calls, asked some people, and FIGURED SHIT OUT without whining and complaining the whole freaking time. You know why? BECAUSE THAT'S WHAT ADULTS DO. No one is going to hand you things on a silver platter, that just isn't realistic. Sometimes you have to work hard and figure things out all on your own. Here, take all this and give it a try." (shove shove shove)

Yeah... It's one of those days. I should go outside and sit in the sun for a bit. Get my Vitamin D on and just soak it up.

Can you tell I hurt my wrist this morning? I did. Totally got bashed while trying to get a temper tantrum induced toddler dressed. It hurt. A lot. Got my wheels turning that I'm not sure how much of this I'm expected to actually take. I'm not feeling very strong right now. Quite the opposite. I've feeling exceptionally fragile and vulnerable. So I'm putting up my normal front when things are spiraling out of control... "Everything is just fine and I'm happy to just be alive!" It's a front... I'm losing control over here...

I want bacon... <3

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.

A New Focus

I registered for the Komen 3-day walk in August. It might end up being physically impossible for me to do, but damnit I'm going to try. I have to do something... I've just felt so lifeless and empty lately. I need to do something for myself that reminds me I'm alive. Not only for myself, but also for the millions of women who have fought against breast cancer.

It may not have been the "smartest" thing for me to sign up to do, given my physical limitations and emotional vulnerability at the moment... but I did it. I need a goal. Something to work towards...

One step at a time...

Wait... Disabled?? Who's Disabled??

While I was at physical therapy yesterday, I mentioned to my PT that I drive with one hand. Having only one hand that is completely attached at this point will usually do that. She asked how I steered, and I demonstrated how I do a flat palm "Dukes of Hazzard" spin around the wheel. She shook her head and pointed out how this may not be the safest way of steering my car - and she's right, one slip and I have no contact on the steering wheel. Danger, Will Robinson! Danger! Tho more likely... Lawsuit, Will Robinson! Lawsuit! So she made the suggestion of getting a steering wheel knob that I can grasp with the good hand and properly maneuver my vehicle.

"And did you get the device from Bed Bath and Beyond yet that helps you open jars?" Oh yeah, I need to pick one of those up too.

So I started looking online for proper steering wheel knobs and other "assisted living devices."

And it hit me.
Like a Mack truck.



I am disabled.



This isn't going away. None of it. The rest of my life will be spent within varying forms of disability. I was always embarrassed or ashamed after a dislocation when I was younger, but the light at the end of the tunnel was that I would grow out of it. That I would have the massive reconstruction to my knees and the pain, embarrassment, and shame would go away with it.

But it didn't.

Now before anyone attacks me for being embarrassed or ashamed of my disabilities, please keep in mind that I am not embarrassed or ashamed of others who have disabilities. Not one bit.

When I was younger, I would get teased for constantly being in and out of an immobilizer for my knees. Kids can be pretty cruel, and I tried pretty damn hard to fade into the background, to fly under the radar of the "popular kids" who had previously caused so much emotional harm. Having an "invisible" affliction is HARD. People can't SEE what's wrong with you, so they either have to ask, or just make assumptions and judge. I don't look sick.

The finger splints help as a visual marker to others that something is different. Most people assume they are jewelry, but are always amazed when they ask where I got them. I haven't had a single cruel comment about them yet. But I'm bracing for it. That scared, hurt little kid in me can't help but brace for a rock that might be coming.

I know I'm rambling, and jumping around. But when learning what the "new normal" is, it can be a bumpy road. Getting out my fears, concerns, sadness, and upset/anger are all part of the grieving process of losing the "old normal" (which oddly enough wasn't all that "normal" to begin with - but I wanted it to be). It isn't easy to admit that things are different... and aren't going back to the way they were before, no matter how badly I want them to.

My PT also recommended that I seek out a counselor to talk to. She said that coping with an invisible illness can be very stressful, especially when half of the medical community will tell you it's all in your head. I may heed her advice and look into it. I'm not very good at coping. Not by myself anyways.



In other news, saw the rheum of doom this morning. He refilled my script for more PT, and prescribed a mild antidepressant in an attempt to get my sleep pattern back on track. I am cautiously optimistic that it will help me sleep better at night. The kids also picked out a memory foam mattress topper for hubby for Christmas. We put it on last night and I woke up with the least amount of pain in my hips in months. Yay. Fingers crossed the combo of new meds and new comfort in bed will be the right cocktail for more restful sleep. See? Positive outlook at the end, in spite of myself. ;)