Day 8

Lets try this again, shall we?

Day 8

This is kinda fun!

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.

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!!!



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.

The Universe Has A Frying Pan...

Ever feel like the Universe has a frying pan? And just when you're losing your shit and acting crazy, you get that *PLANG!* up the side of your head? Sometimes the universe whispers sweetly in your ear, sometimes you get the frying pan.

I was cruising around on Facebook and was struck by this quote:

"However capable and skillful an individual may be, left alone, he or she will not survive. When we are sick or very young or very old, we must depend on the support of others. There is no significant division between us and other people, because our basic natures are the same. If we wish to ensure everyone’s peace and happiness we need to cultivate a healthy respect for the diversity of our peoples and cultures, founded on an understanding of this fundamental sameness of all human beings."

~ Dalai Lama ~

 

I have such a hard time with this concept. When I'm sick or hurt I just want to be alone. Asking for help is SO HARD.

**EDIT**
A friend had this posted on his gmail chat status. The Universe is definitely talking to me today...

 

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

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...

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. :-/

Open Letter to Spouse/Partner*

Dear significant other,

Please understand that I am going through a horrible ordeal. I feel terrible about inflicting my illness on you. I know that you're affected by my changes, and I wish it were otherwise. I dont want to be ill.

I feel guilty about my inability to shoulder former responsibilities at work and at home, dumping more on you. I wish I could do more or know in advance what I will be capable of each day. I worry that you'll think Im lazy or trying to dodge responsibilities I dislike, but thats not it. Sometimes I just cant, and other times I know it would be a mistake to use up all my energy on a minor thing and then have to give up something more important.

I want to know that I can trust you and that you will be available to listen and try to understand. And Ill try to understand that you cant always be available.

At times my feelings are irrational. My moods are erratic, and I get angry for no apparent reason, or way out of proportion to the trigger. This is part of my illness, and I'll try to keep it under control. I dont mean to direct the anger and frustration at you, but I will sometimes fail. If my mood swings become too hard to take and you feel ready to explode, please tell me so, gently. Maybe one of us can leave the scene, and we can talk about it later when we're both calmer.

Sometimes I need to talk about these irrational feelings. Just listen, okay? Please dont tell me how to feel or how not to feel. You can't "fix" my feelings. Please dont judge them; just accept and acknowledge them. When you say such things as, "your illness must be terribly frustrating for you," I feel understood and comforted. But dont tell me you know how I feel. You dont and you cant; no one can know exactly what this is like for me. And when I cry, dont try to make me stop. Please let me cry - I'll feel better later.

I know I complain a lot. It helps to relieve tension. If my complaining strains your tolerance, please tell me so. I wont like hearing it, and may not handle it well, but I really do understand that you need to distance yourself from my complaints.

I need to work at making clear requests so that you'll know what I need. It's not your job to mind-read - its my responsibility to ask for what I want. This is difficult for me; its easier for me to meet others' needs than to admit my own and ask that they be met.

Dont try to talk me out of my symptoms or remind me that they're not as bad as they could be or not as bad as they were. I know I need to stay hopeful, but if you take an optimistic role when Im feeling pessimistic, I feel as if you dont understand me and wont validate my feelings.

I know you dont understand why Im sick. Neither do I. Lets stay away from blame and acknowledge our feelings of helplessness.

Dont give up your whole life for me. Please continue to do the things that are important to you. I wont always be able to do them with you, so do them alone or with a friend. Sometimes I resent my limitations and your freedom, but I'll try to keep a healthy perspective. If you put your life on hold because of my illness, I'll feel guilty and your resentment will build. I appreciate your invitations to do things as a reminder that you still value my company. Please dont assume what I can or can't do; ask, and I'll answer you honestly. I hope you will understand that when I say "no," its not because I dont want to but because I can't or shouldn't.

I know I'm not the way I used to be. I'm trying to learn from my illness, from these changes, and you can help. We can't pretend that things are the way they were or that they'll ever be the same again. But as we change and grow, I want us to grow together rather than apart. Lets keep the lines of communication open. When I need to withdraw, I'll try to let you know so you wont take it personally. Please do the same for me. Don't just pull away; explain to me that you need distance temporarily so I'm less inclined to feel abandoned.

Because we're both experiences losses, we need to grieve. Some of our grieving will be solitary and some of it shared. Lets acknowledge what we've lost by mourning together.

Please dont try to make my decisions for me. If you see me wearing down and think I should rest, I value your observations and suggestions, but dislike being told what I should do. I need to take care of myself and you can help, but dont try to take over. Your encouragement helps me to do a better job of taking care of myself.

When you acknowledge my difficulties and my strengths, I might have trouble believing what you say, but I do need to hear it. Tell me you think I'm brave, that I'm fighting hard, that I'm weathering this calamity well.Tell me you still love and value me, and why. Small tokens help - a flower, a phone call, a card.

Sometimes I may be unable to hear you or I may even push you away when I'm hurting, especially at times when I cant love myself. I'll try not to hurt you, but if I do, please understand that Idont mean to reject you.

I know our sexual relationship has changed and that we both miss the way it was. My lack of energy and sexual interest is a result of my illness and not a rejection of you. I need to remain close with you in every possible way. Hugs are comforting and reassuring to me.

These are rough times for us. I appreciate the efforts you've made to help me cope and to be comfortable. I know I've been difficult to live with. At times you have been too. If we can get through these times together, our relationship will become stronger.

*From Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses by Katrina Berne, PhD

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!