Life Ain't No Stack of Pancakes

You might be wondering what I am really like when you read my blog. Am I always so downhearted and disillusioned? Am I a whiner? Am I a party pooper?

No. To all of those.

I'm somewhat of the mindset that people confuse conversations and statements on social media, blogs, interviews, etc, with reality. These are snapshots in time of what my life is like, this is not my life. Well, that might seem contradictory to everything I've said in the past - but think about it deeply for a moment. You are not your diabetes disease, you are not your sprained ankle, and you are not your asthma. But, living with a condition, disease, or injury can make the bad moments stand out from the good ones.

I'm somewhat of a morning person. By this I mean, if I've had a good or decent night's sleep, I'm peppy at work and drive my coworkers crazy with my happy face and jokes. I'm a fluent sarcasm expert. When someone asks me to do something, I tell them very sweetly "Not today. Maybe Tuesday." Tuesday is my fall back day ... mostly because Tuesdays are usually my days from hell at work. You'd think everyone hates Mondays ... but not me. I hate Tuesdays.

I'm a very loving person, and I just want to be loved in return. This is perhaps my biggest sore spot. As a human being who craves true friendship, unconditional familial relationships and respect, I try to make everyone my friend. I never succeed in this, but I don't stop trying. Someone out there somewhere will connect with me I hope, and I never stop hoping. Hope is all we have on this tiny planet because nothing is certain.

Life ain't no stack of pancakes. Aside from the holy nightmare of being a lac-tard (lactose intolerant), believe me. You can't win every single day; it just doesn't happen like that. Pancakes don't just appear in front of you smothered in strawberries and cream with a hot mess of syrup - as much as we'd all love that to be true. You can't live your life with rose colored glasses on. That's no way to live. Take off the glasses. Reality is that you only have control over your mind and body. Everything else is chaos.

I feel that I am an inspiring person. At work, I'm always told that I'm helpful, knowledgeable, and that others wish they could be just like me. Hey, I wish they could too. It's a definite confidence boost to know that others respect you and look up to you. When I give piano lessons, I try to instill the magic of music in each of my students in a unique way that touches their little souls. I get great comments from parents who are grateful, and see improvements as amazing feats of nature. Well, THEY ARE!

I'm also a very kind person. I mean well. I have a tendency to hold open doors for old men. I don't know why they're always old men, but it feels like 90% of the time, my door holding is for old men. Probably because I tend to be an old people magnet and I go inside the bank like all the little old people. I don't know. I'm laughing now, because it's true. I have an old people radar. I love them, they love me. You can also catch me with my husband making donations to important charities when we can afford it. I'm mediocre at charity, but I try to be a charitable person. I wish I could be more charitable. This last Christmas, we gave to the local Veteran's Association. Well, I did. My husband was down the street but I took my last $10 from my paycheck that week, and stuffed it in the Veteran's Affairs can out in front of a local bookstore. I do the angel tree every year - sometimes for two needy children. My husband and I have done the angel tree 4 out of the last 5 years - when we could afford to spoil a child in a foster home rotten. We also invest in Girl Scout cookies, I've ran my department of over 100 people's campaign for United Way where we raised over $2000 worth of items for a raffle that supported local businesses, low income families, women's programs, and more. I listen to people, I donate old clothes and household items, I reach out to people, I love my animals, and I try to smile. I think that goes a lot in the way of kindness in this era.

I vote responsibly. I'm not sure you were expecting that, but I'm not a political activist of any sort. I have my convictions yes, but I do take voting seriously.

I also cry when I watch documentaries, movies or TV shows that have very strong themes that I can connect with. Cheesy or not, it's hard to touch my heart sometimes with all the desensitization we get with the media and society glorifying and over exposing violence, etc. But when my friends/acquaintances tell me the bad things that happen to them, or I watch something truly heartbreaking, I'm a big fat softie. I just hide it super well.

I love love LOVE to play games. Board games, card games, dice games ... anything that's not creepy or too out there like DND or Magic. No, it's more like I want to sit down and play Phase 10, Power Grid, Ticket to Ride, Boggle, etc. I hate just playing alone with my husband too. It gets old quick. But, we can rarely get anyone interested in coming over for a games night. Though, we recently had one with a friend we've known since college, and to whom I give her daughters' piano lessons - and I think we had a good time playing Clue, Skip-Bo, and Settlers of Catan.

So, even though life ain't no stack of pancakes, it's not all crappy either. I live with a disease. Sometimes my bad days are really bad. People need to hear the bad stuff just as much or as often as the good stuff.  I think that generally, people need to hear the bad stuff more than the good. The people in my life tend to sweep everything under the rug and think it's okay to do so. People did that with my mom's cancer and a lot of them missed out on the last two years of her life. If we don't deal with the obstacles and issues in our lives, we'll never learn anything and we'll never have those awesome days. Besides, do you really want to come on my blog to find 1 sentence saying "I opened a door today."? That would be super boring. I think it's more realistic if I said "I struggled for 30 seconds, but finally was able to turn a doorknob today and open a door. It hurt really bad, so I'm going to go sit down and relax until I feel I have some strength again. It's frustrating."

I'm a person. I'm not a sentence or paragraph. I cannot be "summed up." I live a life that is complex. There's more than meets the eye.

Can We Just Acknowledge That?

So, I went through surgery last August, and then I went through a rough disability patch at work, to working full-time. I jumped back into a corporate climate that required me to work overtime without prejudice of my condition. It was tough. I attended therapy 2-3 times a week, and worked 9 hour days, then came home to give piano lessons for another 2-3 hours. This is on top of the housework and chores and pets as my husband works full-time and goes to school full-time while he is also in a band that practices 2 nights a week.

And, come to find out in late February of this year, that further treatment was necessary. I needed an ulnar joint leveling because the doctor that leveled my radius, did not create the room necessary and the ulna was now too long and not in line with my carpals. This was causing severe arthritis to develop on the bones, putting me in stage 3B. It's frightening.

I was barely making it through a work day. I would often cry at my desk, forcing myself to continue to use the computer non-stop for 9 hours straight. I would take little breaks to complete my occupational therapy exercises, making me look ridiculous to any passersby in my office as I work on the end of a row of cubicles that everyone in the company, including the director of my department, passes all day.

So there I was, forcing myself to work, pushing myself to complete what needed to be done and contribute to the team. It was impossible. I would go home and want to collapse, do nothing. I would be so exhausted at night, that I either passed out, or couldn't sleep. I was going to work every morning with dark puffy eyes, leaving work in the middle of the day for therapy, skipping lunch and shoveling it down in the car, returning to work, going nonstop from 4am to 3pm ... then going later until all my piano students had left for the evening. There was no time for rest. There was no time for making dinner. There was no time for me.

It's now July, and I am once again on disability from work. I've been home since March 23rd, and have been utterly miserable. I'm afraid for my job every day. I am afraid for my financial situation. I get pennies, and then I have to pay all my medical coverage (because they no longer take it out of my paycheck on disability), and then pay all of my medical bills. This leaves me no money to pay rent, no money to pay utilities, no money to buy groceries.... 

And then once again, I am alienated by the people I work with. They stress me out. I have certain ones who just want to text me to complain and say "When are you coming back? I can't deal with this anymore!" And then I have the ones that promised to visit or help me out and just like last time, they conveniently forget out me once I'm out of sight.

Then I get the people who TELL ME WHO I AM. I get tired of it. I explain my disease to them, and they completely disregard the information I disseminate. Well, let me tell you who I am: I am a person with a debilitating bone disease that cannot be cured and who knows her own body and its limits. Don't touch my arm. Don't tell me to get more sun on my scar. Don't tell me that you can't wait until I get back to work. Don't tell me I'll feel better. Don't say that I can ride a bike or roller skate. Don't tell me I should be resting. Don't say I shouldn't pick up my nieces and nephews for hugs and kisses. I am a person who lives Kienbock's disease. It's part of me. It's part of who I am. It does define me to a degree. I'm fragile. I'm vulnerable. I'm scared. I'm stressed out. I'm sad.

I'm a person who just had a very rough surgery and who is still recovering from the trauma of it all. I'm having a difficult time. Can we just acknowledge that?

Back At Work

One would think that after having to go on disability for 2 months and returning to work that maybe I am well enough to actually do the work. I mean, I've had my cast off since the middle of September, I've been in occupational therapy now for a month and a half and have barely used any medicine (because honestly, what medicine works? none of it) that it wouldn't be so bad to return to using a computer 9 hours a day.

Well. Let me educate you on what is really happening.

I told my case worker (who was practically TELLING me to work part-time for a few months) that I'm going back to my full schedule. Normally I work 4 9 hour days, and 1 4 hour day on Thursdays. This is to allow me the time to get to appointments that are always at inconvenient hours, and to get some bloody housework done. Amen right? I mean, for the most part, I love my company and I really enjoy my job so the fact that they offer compressed work weeks is awesome. It would be even more awesome if they would give in and let people work 4 10 hour days but they claim that's too much of a liability .... believe me, I've pestered them.

So here I am, in the middle of week two back at my job. I have lost some friends (who weren't really friends in the first place, they just used me for their own benefit) and my current team has changed a lot, but I have some really good co-workers who are helpful when I need them to be because let's face it: 2 months off of a job that involves routine and knowledge of tiny details for all sorts of one-off situations can leave one feeling overwhelmed with trying to remember everything. My brain hurts. On top of that, there's the stress to perform. I'm permanently disabled by this disease and it's degenerative. Wake up call to those stress givers! In addition to this, I have to deal with the pain of using my hand constantly for 9 hours straight when the pain is unmanageable. I mean, on Monday I did take one of my prescription tramadol (originally for my back) to help alleviate the sharp and festering pains that would not subside and were getting worse, but it can only do so much. So, at the end of the work day my hand and arm are completely shot and exhausted and I have little energy that I can devote to myself, my house, my pets, and most importantly my husband. Hell, I can't even feed myself.

On Sunday evening my in-laws S & J came over to play a game with us. We ate dinner while we played (because well, it was 6 and I had to be up at 3:30 in the morning) and I had to stop game play a few times so I could grunt and yell and do this thing where I halfway lay my head on the table and squeeze my eyes in order to bear through. This is after I spent most all of Friday evening, all of Saturday and most of that Sunday relaxing so as not to aggravate or overuse my arm. And guess what? To my disappointment, I STILL can do NOTHING AT ALL and it's just as bad as if I were sitting in my office keying my work.

So, to everyone who thinks that having Kienbock's is nothing special, you're wrong. It's extraordinary. My boss may not care that I'm different than everyone else, but my friends and family had damn well better understand that this disease is like a sucking chest wound in that you may start with something seemingly curable or manageable, but once you get into that hospital operating room, you realize it's like a tiny black hole in your personal universe, sucking everything in creating a precarious situation that begins collapsing in on itself.

If it were possible for anyone to understand chronic back pain, (I suffer from that as well on a moderate scale but that is beside the point) think of my disease as chronic back pain. If I were a weaker person, I could easily become addicted to prescription medication, I could easily succumb to wasting my life, I could easily turn into an alcoholic, etc. A good number of people with chronic back pain struggle with these kinds of issues because there is no way to manage it. I had a relative die from an addiction brought on by chronic back pain after he fell off of a roof working in his roofing business. I've seen it first hand with co-workers of my father who have those "panic" morphine buttons that they can just inject themselves any time they need while at work. I know their pain. I know their struggles to get through the day without needing to scream your lungs out and insist on chopping off body parts in order to take the pain away. If I were a stronger person than I am, I wouldn't fall into the trap of depression, but I have to be thankful for how strong I am as it is. I couldn't ever let myself be overcome by this disease in ways that broken people might.

So in reality, my return to work is more of a chore and a trial than a need for cash. I mean, I do need cash - I have bills too. But this is extremely difficult. I know there are other jobs out there where it would be more difficult, but this is who I am and what I do. I deserve as much attention for my difficulties where I am at in life.You may think that I should be grateful, and don't think that I am not. But picture yourself doing a job with one arm. What job is it? I don't have nearly as many options as you might think. I'm really stuck with what I've got and I have to pay my bills, I have to have medical insurance and I have to survive like everyone else. There are just days (like every day) where I want to give up and tell my husband that I'm done and there's nothing I can do because the pain is too much, the difficulty in using my hand is too much.

I'll Never Be Who I Was

Some revelations are so profound that I often have to push them out of my mind. Recently, a family member who pays little attention to me asked me the question everyone asks when they find out I am a musician. "Can you still play?" Sad smiles don't even begin to cover the immense shame and pain that I feel when people ask me this.

I was talking to a gentleman at occupational therapy yesterday who asked me some very pointed questions strangers shouldn't ask someone. But, we're all at hand therapy and a few of us can be kindred spirits. Sure, why not? I answered his questions becuase he clearly had no idea who I was and what I deal with.

I didn't catch his name but we can call him Tom. Tom is an arborist who has severe pesticide and chemical damage to his hands and feet. Tom says "You injured yourself pretty bad there, did you?"

"Um, no it's a bone disease." I do that to cut of curiosity seekers - you all know that the majority of people don't care or show a passing interest.

"It's a what?"

"It's called Kienbock's disease."

"WHAT?" Clearly Tom is not a disinterested person. He thought I was just there after doing something stupid like dropping a concrete block on my hand or something. I mean, I can sympathize because in his line of work you have to be a big risk taker if you deal with pesticides and chemicals constnatly so maybe he thought that he had  a bird of his feathers or something.

So, I sat there and explained to Tom. His face looked crestfallen while I explained what my disease is in short, and how that affects me. He asked me some poignant questions and what I did for work. When I told him I teach music in the evenings he looked like he was going to cry or hold my hand - but his hand and my hand were both in electrode wraps.

I don't normally connect with people. I have a very dangerous past that disallows me the comfort of connecting with people as I am very damaged emotionally. For some reason, this man didn't bother me. Typically it bothers me to talk about myself to just about anyone. I was never able to talk to my mother when she was alive, and forget talking to my dad or my sister and brother. My best friend and I have an understood silenece about ourselves in which we don't need to talk about things - our presnece is just comfort. But, this man was different. I think it was a good thing for me. For once, it was a good thing to connect iwth a person.

It really hurts me that people don't really want to know about you when they ask. It hurts me just as bad when people who you do want to know you, don't want to know you. this was fdifferent somehow.

I'll never be who I was. I'll never play the piano the way I used to when I was 18 and in my prime and a student of one of the best pianists I've ever had the plasure of working with. I'll never play those Chopin Nocturnes my husband loves, and I 'll never perform again publicly or play for church. From our short 10 minute onversation, this man knew that and felt my struggles and pain. He asked me what I'm going to do. I said "What can I do? This is my life. I have to live with it and deal with it." I'll never be that person again. I was never meant to be that person.

My Crafting

I've mentioned it in the past, but I do a lot of therapy in the form of crafting. It helps to develop my fine motor skills, range of motion, nerve sensitivity and muscle definition. Therapeutic Creations is what I've dubbed my online shop and if you follow that link, you can see the things I've been able to accomplish. Every purchase supports me and hopefully creates awareness of my disease.

If you know of local craft fairs or events that are inexpensive where I can sell my items, please let me know. Anyone who writes articles is also welcome to interview me for a piece as long as it highlights my disease to create awareness so please let me know as well. I was featured last year in my company's monthly newsletter that was distributed to several thousand employees and it would be nice to gain a larger audience and following. Here, and with my shop.

Therapeutic Creations

I do regular therapy for my disease. In the beginning, it was difficult to get therapy because we were in the military stationed in Germany. We would have to drive 10 miles out of our way 3 times a week to go to a manipulation therapy - which I wasn't too keen on because the girl I started with, was switched on my my second visit, and my second therapist was not proactive, or talkative, or ... good with English. Not that I couldn't converse with her because I speak decent German. Just health-wise, I know no terminology or grammar.

When we were re-stationed in Kansas, I found a new therapist at an occupational therapy clinic. I LOVED going to occupational therapy. My therapist was really good, and she loved her job. In fact, she switched careers mid-life when her mother had cancer and needed treatment. It got her into therapy, and so she became a licensed hand therapist. Now, don't get me wrong. It's not at all what you think. Yes, there is exercising, but there are also games and skill tests. Like .... digging lite brite pegs out of playdough, or inserting 50 pins into a tiny peg board, or finding the pennies in a bag full of change. All done one handed mind you. But, there were also difficult tasks like stretching ropes, and the arm cycle, and these weird stretches that would make me light headed.

Since I can't have therapy forever, I have come up with different things I do to keep my arm and hand healthy. My favorite is crafting. I scrapbook a lot. I will work for hours and get lots of pages done. I plan them, execute them, and I'm not half bad at my simple styled pages. My husband even bought me a Cricut machine one year for my birthday. I try to use it a lot because it can do so many cool things.

Another activity is coloring, though, I have to be really careful. Coloring can be too vigorous and because I can't feel my hand, it's really hard to loosen my grip or not to tense up my hand and arm.

A close second favorite would be jewelry making. In fact, my jewelry making inspired me to take a friend's advice and start my own Etsy shop. https://www.etsy.com/shop/TherapeuticCreations. I love making earrings in particular. You can never have enough earrings. But I also do a lot of barrettes, some bracelets and a few necklaces.

Another fun form of therapy is comic drawing. http://doniellcharie.doodlekit.com/. I draw stupid comics badly (yes, on purpose) that are taken from things happen in my everyday life. It's quite enjoyable since I like to make fun of a lot of things like people who say stupid stuff ... and do stupid stuff.

Other forms of therapy include (but are not limited to) Lite Brite, massaging vitamin E oil into my scar and scar tissue, hand and arm exercises, red band exercises, warm water manipulation, bracing, Kinesio taping (which is fabulous and I would recommend to anyone with horrible scar tissue issues and messed up muscles), just to name a few.

Kleenex and More Deep Thoughts

Today, when trying to blow my nose before using my allergy nasal spray, I grabbed the tissue box on my desk at work. The tissues were not sticking out of the top like they should have been ... they were stuffed down inside still. For some reason, the last Kleenex did not pull out the next. After picking up the box, I tried pinching and grabbing the next Kleenex. Epic fail. After a good 15 seconds of trying to get the darn thing out (and 15 seconds is a long time, took me about 8 tries to get it out), I realized that I can't feel my fingers.

It always escapes me that I can't use my hand. I still get into the mindset that I CAN TOO carry in the bag of groceries, or vaccuum the carpets. There are a few big things that I absolutely cannot do such as scrub things, ride most rollercoasters, or hold on for dear life to the "Oh Shit!" handlebars.

After my first surgery and I came home from the hospital, we video called my family. My sister, her husband and their two kids were staying at my parents' house that Thanksgiving. My siter's very precocious daughter is very much like me. I remember she was sitting on my mom's lap, and we were all talking about the hospital, and the surgery, etc. I was explaining how I couldn't feel my hand, but I could wiggle some fingers pretty good, moving them up and down and bend them slightly. This was a very big deal to me at the time, mostly because I was afraid I'd lost the use of my hand forever. One of the things my mother used to do is try to alleviate heavy issues with humor. Often obnoxious humor. She asked me if I was working on my "bird." It took me a second. "Mom, are you asking if I can flip people off?" If you recall I come from a very devout Christian household where saying crap was a sin. My mom says "Yeah," and shows me her middle finger. She did it right in front of my sister's daughter. I told her that wasn't appropriate. She said "Oh, she's only 3, she doesn't know what it means. Show me your finger!" My mother was encouraging me to flip people off. This was a post-surgery therapy I could live with. Much better than lifting my arm over my head and trying to pump a fist about 10 times.

Losing feeling and range of motion is something I'll live with forever, and is not easily accepted. I'm had these issues for years now, yet when I go to grab that kleenex,or I make an effort to try and flip someone off with my right hand, it's evident. You would think by now that I would be used to this kind of thing.

Showering is easier now, but still difficult. A side effect of surgeries has been an extreme sensitivity to temperature changes, or, conversely, an apparent lack to knowing my temperature. It's weird. I have both worlds. The scar tissue in my arm has built up rather knotted, and it does not like hot water, or cold water when I'm washing my hands or showering. One therapy I used to do was sand at the hand therapist in Kansas City, which is like water therapy. You stick your arm inside what looks like a rolling heater, and it blows sand all over your arm. Some of the things you can do inside it are make repetetive movements with your hand and arm, or squeeze objects. I like the hand motions, and I've transfered that to water. Although my hand and arm do not like hot and col, they really enjoy water. Water breaks down barriers that are evident 99% of the time. I love making swishing motions with my hand and moving my arm gently from side to side anytime i'm in a pool for example. Nothing pops, no tendons twinge over bones and scar tissue, nothing feels completely out of place. But once you remove the water, it's like the kleenex box all over again.

What drives me to be so patient and to only contemplate is my lack of anger with my arm itself. Sure, I'm mad that it took years for doctors to discover that I wasn't a hypochondriac, suer I'm mad that I was born with a bone compensation, sure I'm mad that people treat me certain ways based upon my abbilities - but I don't let any of this stop me. I continue on with my life. I realize that anger gets you nowhere when you can't conctrol the situation. Since I can't control hardly anything involving my arm, I've become an overly patient person with myself. I don't push. I'm the ever driving hammer at the nail.

I don't recall if when I left the office today though, the kleenex I took brought up the next one .... I guess I'll find out tomorrow when I need to take my allergy medication.