I did something creative

It's been a while since I posted anything. All kinds of zany shit going on in my head right now, but I'll focus on something positive and fulfilling.

I was a part of an INCREDIBLE wedding last weekend (10/06/13) and got to flex my budding seamstress wings in the process. I did some minor alterations to a dress, but I'm pretty proud of the outcome and wanted to share.


So here's the dress in it's original glory. It's a size 6. Um. Yeah... I am not.

First step was to take the lace around the waist off. I pulled out my trusty seam ripper and went to town. Here's the dress with the lace removed.

Then I pinned on the copper ribbon that would be replacing the lace. I only stabbed myself 20 times, but was very pleased with the look.

Here is the ribbon fully stitched into place. The ribbon is wired, so it laid down nice and flat for stitching! Only stabbed myself 10 times getting it on!

So the back was a little more tricky, and I didn't take overly fabulous "during" pictures. Ok, I didn't take any, haha. For the back I cut a modesty panel out of the skirt liner and stitched it in along the right side of the zipper (which was kept fully unzipped). The left side of the modesty panel hooks into place with hook & eye closures. Since I had plenty of ribbon left over, and the back had a weird pucker to it, I decided to throw in a slight corset back. Along the zipper, I measured out loops and made them out of the same copper thread that I stitched the ribbon onto the dress with. I then threaded the ribbon through and voila! Corset back! I blew up the below picture slightly so you can see the loops the ribbon goes through and the modesty panel in back.

And here is an action shot from the actual wedding. You can see the modesty panel in place and I tucked the loose ends of the ribbon into the back of the dress. In this shot I am fastening the beautiful brides shoe. Love those shoes. Love that girl!! I had a great time at the wedding, and I had fun working on the dress too! <3

Wrist Appointment

Well, it didn't go as well as I had hoped... my wrist still isn't fused. The carpals are all meshing together nicely, but the actual wrist (where my hand attaches to my forearm) still has a bit of a gap. I'm having it rechecked in 2 months. If it STILL isn't fused by that time, then we'll probably have to inject the wrist space with more "bone graft material" and see how it goes. I mentioned that I was having a great deal of discomfort lately, and she suggested I continue to do my own hand therapy, but keep lifting things with my left hand to a minimum. Lifting things might be causing little microscopic tears where those last 2 bones won't fuse, prolonging my healing. So I have to cut it's use waaaaaaay back.

 

Sucks, but it is what it is.

 

I'm trying not to feel disappointed and defeated, but it's hard. We are 2 months post-op and I STILL can't use my hand. It's just a little discouraging.

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.

Another Surgery?

Saw the Orth. Dr today. They took x-rays of both my wrists. The right one looks good - I have a pinched nerve from sleeping on the couch with my arm curled under me. I just have to sleep with it straight and it should clear up.

 

My left hand is a whole other story. She said the xrays were "ugly." The carpal bones are all twisted around and not sitting right. One of the bones that is supposed to sit in a little "socket" isn't even close. SHOCKER! But she said my options are few. Either leave it alone, or fuse the wrist. If we leave it, the wrist will remain unstable and will cause me pain for the rest of my life. It's not going to "get better" on it's own. It just is what it is. With the surgery, my wrist will be ridged, and basically stuck in the same position as when I wear my wrist brace. So I'll still be able to flip my hand over, type, etc... I just won't be able to flop my hand up and down (which I currently can't do anyways).

 

The surgery would be pretty brutal. Longer incision and some permanent hardware. They would strip all of my cartilage off my wrist bones and break a couple to promote bone growth. Then they would all just grow together. It would be similar to the first wrist surgery as far as post-op. It would be out patient and I would have another pain pump post op. Cast for 6-8 weeks and that's it.

 

Maybe I'm crazy, but I'm leaning towards surgery, and sooner as opposed to later. I know it would be another summer in a cast, but with the fusion, I should be able to be WAY more hands on with the kids - as I won't be guarding that wrist and my pain will become zero after the bones heal.

 

Decisions Decisions...

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. ;)

New Wrist Brace

Today started my new schedule with OT and PT. I spent a whole hour in the pool today and I am SORE. But sore in a good way. I'm hoping I learn enough excercises in PT to keep supporting my sloppy joints after my visits run out for the year.

At OT I was fitted with a new wrist brace (finger splints should be arriving in the next 2 weeks). The new brace supports the distal head of my ulna and there is a secondary strap to force my thumb into flexion at the MCP joint. We learned today that my left thumb hyperextends and locks if not supported. This is kind of new for me, but it's been a while since my thumb was really worked on/looked at. Here's a couple pictures:

Back of wrist:

Palm (as best I can):

My wrist is REALLY sore this evening, but I'm assuming that was from 1.5 hours of therapy and a new brace that doesn't act as an immobilizer. We shall see how I feel tomorrow. New PCP told me to avoid taking NSAIDS and other anti-inflammatories. I think I'm due for one tonight. ;)

Meeting a Potential Ring Leader...

I'm heading in to meet a new Primary Care Physician today. I'm really really hopeful that this will be the beginning of a great relationship. I contacted the rheumatologist that was previously recommended, but he's not accepting new patients until February 2013. I'm just hoping that she will be willing to help be my ring leader. I'm trying to compile a list of all my symptoms and issues and see if she can help with connecting the dots. Fingers are crossed! I'm sure I'll update later with how it went.

I also contacted my insurance company and they will cover my silver ring splints 80%. So that has saved a TON of money! Hoping to get those ordered and shipped asap! Since the weather has taken a turn for the colder, I've been in more pain lately.

I'm also contacting a lawyer to discuss social security disability benefits. Its worth a shot to at least talk about it. I can't do massage any more. I can't type effectively with one hand, nor can I do filing. Kinda makes my 2 career backgrounds obsolete. Looking into additional careers that don't involve your hands is HARD. So far I'm looking into energy work - reiki, craniosacral, etc. My OT's also suggested becoming a COTA (certified occupational therapist assistant) as they said I have the right personality for it, and the money is good. I'll look into it. :) I just don't know what to do in the meantime...

Finger Splints

Today was another day of measuring/sizing for my finger splints at OT. She gave me a set of cheapy plastic ones to try on one finger to see how they feel and see if they are effective for me. The difference I feel already is SIGNIFICANT in just the few knuckles I have braced. So now I just need a script from my Orthopaedic Surgeon (no prob there, she knows I'm an anomoly and will do just about anything I ask to make sure I am comfortable) and to run it by my insurance company and convince them it is a medical necessity. I think I'll send them the following pictures and see what they say...

Without Splint:

With Splint:

Do you see the difference? Because I sure as hell do. Plus I FEEL a difference. Typing right now doesn't hurt in that finger. I'd forgotten what not being in pain felt like... If this is it, sign me up. I'll start selling my plasma NOW to get my hands taken care of.

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...

Occupational Therapy Begins

This morning I had my initial evaluation with the occupational therapist. First visits are always boring. Basically all she did was look me over, talk about my health history, and get my current range of motion measurements. The real fun starts Friday when I go in for my first session. She did give me a packet of exercises to start today, as well as scar massage she wants me to start.

I was pretty put out by how limited my ROM is. I cant yet turn my hand over. I know I need to be patient and this is going to be a learning process, but still. The notion of a "new normal" is something I'm having a hard time with. There are just so many "new normals" I'm trying to deal with all at once. Not sure which way is up. And I'm afraid to make personal demands... To really ask that my needs be met. I have to make it to these appointments and I need to make sure that I am demanding I have a means to get there. Sucks, but I have to make it work. With only one car, makes it interesting.

Blah.

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!

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.