Next Up...

Jaw.

I've officially reached my tolerance threshold for my jaw, so that is the next major joint to be looked at. I've been in contact with 2 tmj dysfunction specialists and go in May 11th to get the scoop as to what the hell is going on in there.

My hope for a year without issue will not be happening.

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.

T Minus 3 Days...

3 days until the fusion commences... and of course I get a wicked outer ear infection. I swear I need to do something about my OCD ear cleaning fetish. I started antibiotics yesterday and just have my fingers crossed it will be cleared up enough by Thursday for us to move forward. I've been taking Tylenol and alternating hot and cold compresses. I've also been using garlic oil drops. Stinks like crazy, but is pretty soothing too. Ready for that nonsense to calm right on down.

Ugh.

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...

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

Angry...

I've been in a pretty piss-poor mood lately. Mostly due to money woes, but also other things getting on my nerves. And in a time when words fail me, music comes to my aid.

I know I've been on a Mumford & Sons kick lately, but another song has me completely enraptured. Mostly because the sheer frustration/anger/fury is so passionately flung from their lips and instruments. I just want to crank up the volume, throw back my head and scream...

Broken Crown

Touch my mouth and hold my tongue
I'll never be your chosen one
I'll be home, safe and tucked away
You can't tempt me if I don't see the day

The pull on my flesh was just too strong
It stifled the choice and the air in my lungs
Better not to breathe than to breathe a lie
'Cause when I open my body I breathe a lie

I will not speak of your sin
There was a way out for him
The mirror shows not
Your values are all shot

But oh, my heart was flawed
I knew my weakness
So hold my hand
Consign me not to darkness

So crawl on my belly 'til the sun goes down
I'll never wear your broken crown
I took the road and I fucked it all away
Now in this twilight how dare you speak of grace

So crawl on my belly 'til the sun goes down
I'll never wear your broken crown
I took the road and I fucked it all away
Now in this twilight how dare you speak of grace

So crawl on my belly 'til the sun goes down
I'll never wear your broken crown
I can take the road and I can fuck it all away
But in this twilight our choices seal our fate

This song speaks to me. I've made "bad" choices, I've sinned, my values are all shot... I took the road and I fucked it all away.

Not just the lyrics, but the instrumental is amazing as well. Such an obvious outpouring of hurt and anger...

Hiding Doesn't Help...

Therapy Round 2 this past Monday. The session itself was pretty mild, the conversations after were a bit more indepth.

Then the 24 hours lag it takes hubby to process set in and it's been a whirl-wind since, to say the least. He's panicing, scrambling, smothering me... He doesn't understand that by doing that he is pushing me further away.

And I've been hurting. My whole body just hurts... and I'm not sure how to tell him I can't take anymore. I am having a really hard time hurting as much on the inside as I do on the outside. It's getting to be overwhelming. I can't make the physical stop or go away... I'm stuck with that for now. But I just want a break from the emotional hurt and pain too. I just want a little time away for myself to just breathe a little, regroup, find my footing again...

But even if I ask for it, I won't get it. I'll have to demand it, take it regardless of hurt feelings and tears, and power through.

This sucks.

And now he's acting like everything is fine. Hiding in plain sight...

Interesting Side Effect...

Went to couples therapy Monday night. It was originally meant to be for us to work through our issues and learning to cope with the "new normal" together. But as I was seeing the councellor separately first, it kind of morphed into what can I do to make myself more comfortable, more stress-free, and the topic of me "taking a break" from my family was discussed. I had a breakdown and told hubby all about the things I had been thinking/feeling (wanting to leave, having everything planned out should I "accidentally" parish, not feeling happy, etc) and he was actually excited to go to therapy. I was so uncomfortable the entire time I was there, but I had some very moving moments of opening up about my past relationships - of what has brought me to where I am today.

I had an enormous breakthrough of letting go of past hurts... I have always been very envious of the relationship my mother and sister have, and as long as I can remember, my mother has always said "I don't want to hear it" when I would attempt to be closer to her - to share my life with her on a deeper level. I thought for years it was something I had said or done that caused her to have no interest in a deeper relationship with me. It wasn't until this therapy session that I realized it's not because she doesn't love me - it's because she loves me so much that when I share hard times and pain, it is just too intense for her. I can empathize with that completely. Its her defense mechanism that I had been misunderstanding as lack of interest/lack of caring. I felt a great sense of relief, a weight lifted from me when it finally dawned on me.

The rest of the session wasn't quite so warm and fuzzy (not that the previous realization was what I would call warm and fuzzy to begin with)... Hubby admitted he knew I wasn't happy, that he doesn't think I've ever really been "happy," nor does he really believe I'm capable. That was hard to hear, but mostly because it's true. We talked about how I internalize EVERYTHING and never really let things out. It was good to have that acknowledged.

But the strangest thing happend on the way home. I started to hurt... All over. And intense ache through every tissue in my body. I suspect I've not only been internalizing my mental pain, but my physical as well. I was not prepared for such a flood of physical pain. I am NOT a fan of that... If opening up and being a better person means being in chronic pain all the time, I'll take being an introverted hag over the alternative any day...

Taking a Step Back

My last couple posts have seemed pretty bleak, which is appropriate, as I have been feeling that way lately. I have had more going on then just my body falling apart. My family life is a little shakey right now too. I've been trying to vocalize my needs, and I am simply not being heard. Or I'm being heard, and then deliberately ignored - which in my opinion is so much worse. I mentioned couples therapy to the hubby and he was confused. "Why would we need that?"  Oh I don't know, so that you hear and maybe acknowledge what I say? So that we can BOTH be armed with tools for coping with the "new normal?" So that we can figure out a game plan for moving forward?

In response to me leaving and spending the night at my parents the other night (again, I was not being heard or deliberately ignored) he booked a long weekend where we spent our honeymoon... A thoughtful gesture, only we are also bringing the kids, and quite frankly we don't have the money to GO on vacation right now. So not only will it not be relaxing, as I'll still have to be Mommy and watch my kids like a hawk at a water park (they can't swim yet, so my anxiety will be through the roof - plus my instability in the water is pretty bad - all my braces have to come off) but then I'll have to worry about how this is going to effect our finances for the next couple months too.

His mother brought up that she heard we were going on vacation, and that she was excited about it. I told her I wasn't so sure about it, and she looked shocked. She rattled off the list of all the fun things there are to do and I just clinched my teeth and said "You're absolutely right, Hubby and the kids are going to have a great time." She sighed heavily and said "You know Mer, sometimes you just have to go along for the ride." I got so angry, I practically shouted "No, sometimes I have to be the only fucking fiscally responsible adult in the house and it is utterly exhausting. If we can't afford to go to Disney in the spring with the rest of you guys, we can't afford to go on a long vacation anywhere else either! Maybe I can schedule to have our heat and electricity shut off while we're out of town, since they are about to do it anyways..." She just looked at me like I had slapped her (well, I verbally did I guess) and my sister-in-law chimed in that it was time for a topic change as the tension in the room had gone through the roof. I said I was sorry and just looked at the ground.

I am ALWAYS the bad guy.

My father-in-law quietly said after "you know, I agree with you." It was a little validating to have someone on my side, but it was also so uncomfortable being there after my little outburst. I left shortly after.

Running away on a mini vacation is not going to make "this" go away, nor is it going to make it any easier for me. And undoubtedly, Hubby will set some deadline that the house has to be "completely clean" before we go anywhere, adding additional stress to what is supposed to be a fun thing. But since I'm the one saying this is a bad idea, or that we should think about rescheduling or something, I'M THE BAD GUY.

I'm not the bad guy, I'm the adult in this situation. In every situation.

I really need to take a huge step back from my life and really take a hard look at what is adding ridiculous stress to my life. If it's something I can change, I'll change it. If it's something that is unwilling to compromise or listen, maybe its time to let it go. Something has got to give, and I'm just tired of feeling like the only one who is bending/breaking.

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...

Asking For Help

I've never been very good at asking for help. Ever. It's just not something I'm comfortable with - which I know is just one of those ridiculous mental flaws that I have.

But now that I literally am having a hard time doing what used to be normal everyday activities, I'm finding that I can't do things alone. As much as I think I should be able to...

So today I am single parent as hubby is off in California for the weekend being a good sport. Long story - not worth explaining. It just so happens that I have just about zero food in the house and need to head to the grocery store. With both kids in tow. AND I'm having a wicked pain day today after washing ALL the dishes yesterday by myself. So I asked a buddy yesterday if he could help today. Yeah, sure, no problem. Well turns out today that he is spending the day with the new girlfriend, so he won't be available to help until after 5pm. I was hoping to be starting dinner by then... So I told him no worries, I'll ask around.

Asked newest buddy and she is repainting a room in her house today, so she won't be available. Wanted to ask super bestie, but she just got home from a work trip herself and it was her first time away from her little baby. I don't want to intrude and bug her - especially because I think she might be at work today anyways.

Now I know beggers can't be choosers, so if I want someone to help me, I really need to be flexible to their schedules. Only... it's not just me - I have my little peoples schedules to tap dance around too.

I just hate feeling rejected when I already feel low. I know it's not intentional, but yeah... This is why I don't ask for help. The rare times I do ask I try to ask in advance, then when the person I was counting on bails, I'm screwed trying to find a replacement last minute. And then I end up having to take care of shit by myself anyways. So why bother asking in the first place?

Maybe I'll call my dad. See if he can at least meet me at the house after I get home to help bring the groceries in. Or my brother...

(sigh)

I Think I Need Help

Today has been really hard. Every once in a while I'll get smacked with the idea that what I am going through isn't going away. It isn't going to "get all better." THIS is how my life is going to be.

How the hell am I supposed to cope with "this?" Granted, "this" isn't exactly new. I've been dealing with "this" nearly my whole life. But it just seems that "this" has gotten SOOO much worse in the past year. I mean really - who the hell dislocates their hand/forearm taking towels out of the drier? Who the hell tears muscle by simply being, or sneezing? Me. I do. And it's only going to get worse???

Today's depression tailspin is brought to you by a former massage client of mine. I haven't seen her in a year, and she came into the office today looking for me. She wanted to book a massage with me, and book one for her daughter and I had to inform her of my change in career.

Broke my fucking heart.

What's worse? SHE burst into tears and lamented that she could never go to another therapist - that she didn't want anyone else. God damn that was painful to hear. Amazingly validating that I did good work as a massage therapist, stab in my heart that "this" took it away from me.

I mentioned my blah-dom to my physical therapist and she gave me the name and number to her psychologist and the therapist that she sees. She strongly recommended I call them. She said that she probably understands better than anyone what this chronic illness/syndrome can do to ones mental state, and she really wants me to call them and see them before I really start to get antsy. I think I'll take her up on it.

Somethings gotta give. :-/

Ka-CHOO!

One of my kids favorite Dr Seuss books is All Because A Little Bug Went Ka-Choo. Its a whimsical story about how a tiny little bug sneezed and ultimately sets off a Rube Goldberg of catastrophe in a nearby city. One of the last pages shows a parade and a circus colliding downtown, animals and instruments everywhere. This usually illicits hysterics from the small boy - he does love silliness.

What does this have to do with anything?

Well, yesterday I went to Michael's with the fam to pick up a family craft for the afternoon. As we were checking out, I sneezed. Ka-Choo! It wasn't a very big sneeze, in fact, quite puny on the sneeze scale - but here's the thing. I hold my sneezes in. I've been told for years I'm going to hurt myself doing that.

They were right.

During said sneeze, I felt a pop... in my abdomen. My PT checked it out this morning and thinks I may have just ripped my diastasis more, but she wants me to get it checked out. So I'm going in to see my PCP this afternoon to have her mash on my tummy, to make sure I haven't created a new hernia (I already have a small umbilical hernia). From there she will be able to make a recommendation where to go next.

It REALLY hurt after I did it. To the point it doubled me over in line... and I couldn't get upright right away. I've had lingering pain that spikes when I sit up, or engage my abdominals. I also have this lingering feeling of "gotta pee" in my lower abdomen, so I may have just strained one of the ligaments that supports my bladder. I've had no issues with urination, or holding my urine, so that is fabulous! Just one more weird thing to tack on the list of bizarre-o happenings that my rheum claims is unrelated.

We shall see what the PCP says.

Fingers crossed for a strain and no more surgery!!

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?

Feeling A Little Defeated

I've been working really hard at both OT and PT the past 2 weeks. I'm tired, I'm sore all over, and I just feel blah. Yesterday was my designated stay at home with the kids day, and I just wanted to cry 75% of the day. It was SO HARD. I was just so tired... and my hands and wrists are just so shot, I couldn't wrangle the kiddo's like I used to. Previously simple tasks I took for granted are now next to impossible... Picking up my little boy, snapping him in his car seat, pushing a shopping cart...

I knew things were going to be different, that I was going to have to get used to the "new normal." I lost one career, the second is hanging in the balance. If I lose my identity as a parent too I'm not sure what will be left of me...

Keeping it together... barely.

In other news, still no word on my silver ring splints. The OT's suspect that the delivery may have been delayed due to the holiday. Fingers still crossed they arrive before Christmas... Silver lining indeed!

Edit:
Of course as I'm feeling all mopey, I pop on facebook and am greeted by this:

 

Point taken, universe. Point taken... ;-)



Thanksgiving

I hosted Thanksgiving this year and I tried to pace myself with all the food prep a couple days before. I still over did it and didn't ask for nearly as much help as I actually needed (I did a gluten-free menu this year). I've been paying for it the past couple days. Unfortunately my spouse doesn't completely understand that recovery isn't a one day deal. I still am in more pain than normal and I just feel weak. I've made the decision not to complain, as best I can, but my patience is non-existant today. It's not fair to my family.

But I do want to say that I am thankful for many things. I am thankful for a family who is trying to understand, trying to be supportive. I am thankful for a team of doctors and therapists who are working with me to get to my "new normal." It really is a blessing.

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...