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. ;)

Happy Holidays!

This time of year is always so hectic... And this year was no exception. I had a lovely holiday tho, surrounded by family and friends, and I got some pretty sweet gifts too!!

Unfortunately I did not make it through unscathed. I managed to partially tear one of the heads of my bicep. In the next couple weeks, it will either heal, or tear all the way through.

Goodie.

So other than my arm randomly trying to fall off, I had a great holiday. My little girl turns 5 tomorrow... Hard to believe she's getting so grown up so fast!

Head, Shoulders, Knees and Toes, Knees and Toes!

Things had been pretty uneventful over the last several days. I took the day off of PT yesterday as I was feeling under the weather and now I'm regretting it. Last night I got the strangest pain in my shoulder. It was definitely a pulling/tearing sensation. I tried putting my arm in several different positions, hoping it would release. Nothing worked. Today it does feel a little better, but oddly by bicep is completely sore and my arm feels "heavy." Almost as if I can hardly lift it on my own. Normally my shoulders are pretty compacted, but this one seems to be sticking out slightly further today, and it's also sitting a solid inch lower than the right.

Of course it's on the left side.

What the hell is happening to me?? I get the why, I do. I was just hoping for a break... Is there no such thing as a break when your body tries unravelling and tearing itself apart?

Two If By Land!

I've been pretty quiet lately... But today I have something to talk about! Today was my first day of physical therapy on land. I know that doesn't sound too spectacular, since I've been hauling myself around on land my whole life... but it's a little stepping stone for me in this journey, and I'm excited about it. It was HARD. New exercises for me to do at home in addition to my putty hand ones too. We are really getting down to the nitty gritty of why my knees are all out of wack (my muscles being built up so much to maintain stability on one side, completely weak and unstable the opposite way). It's really nice having a PT that "gets it." She doesn't push me beyond my limitations. She questions when things pop or crack, rather than have me "push through it."

Such a blessing.

I see the PCP I adore on the 26th, and the rheumy of doom on the 27th. The PCP actually mailed me an article and brochure about "living with hypermobility syndrome." because she researched it and wanted to make sure I had seen it! LOVE HER. Rheumy of doom just said "thats inconvenient" and wrote me a script for new drugs. Hmph. Guess I know where my allegiance is tied...

Discharged From OT

It's hard to believe, but as of today I've been discharged from OT. My most sincere thanks and gratitude go out to Marilyn and Kelly, my compassionate, brilliant, amazingly wonderful OT's. I've already friended one of them on fb, and I'm sure I'll be keeping in touch with the other. I feel overwhelming gratitude to these women, who have been so instramental to helping me achieve the tools I need in order to be successful. They have been nothing but 100% supportive along this leg of my journey, and I can honestly say they have been a blessing.

Marilyn and I were discussing today ways to make splints and braces more "beautiful" and I think I may be on to something... I came across a really cool bracelet on Etsy that I may be able to incorporate into my bracing. And it appears it may be easy enough to make on my own. Marilyn even gave me some extra foam and told me to give it a try - and to come in and show her if it is a success!! :D

Here's the bracelet I was looking at:

 I was thinking I might be able to wrap it on top of my already existing brace, or incorporate it into becoming an actual brace itself. I may have to check out Michaels to see what clasps they have, and possible medallions. Maybe a new calling?

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: