Saddle Up

It's been a long and bumpy ride the last few months. Needless to say, I've been rather busy what with returning to work, running my home business, doctor appointments, etc. But, since my last post we were able to get a bone stimulator approved through my medical insurance. Our portion of the bill ended up to be a little under $800 - which means my insurance paid a freaking boatload to get the damn thing.

At my two month check up after receiving the stimulator, Dr. L was surprised and pleased with the (extremely) slow regrowth rate that is clearly visible in my most recent x-rays. So, I have to continue using it for who knows how long, but hopefully my next check up report will be even better than this one.

I have not had anymore accidents, but I do suffer from chronic pain in my arm - which is to be expected with my disease. I can't actually remember being without pain as I've lived with it for so long now. Nor have I had anymore medical allergy symptoms - which is largely thanks to my manic head-in-toilet episode in July.

Some things have returned to normal, and others have not. But, despite this I am still living to the best of my abilities. Every day is a new adventure for this Kienbock's girl.

People still don't understand my condition. I have a group of ladies at work who constantly nag at me about my condition on an almost daily basis. It's almost as if my very definite words of "it's incurable" just didn't work their magic in their brain cells. Not that I can really blame them. I'm barely around working 24 hours a week at the moment. I'm not allowed to be in therapy due to the fragile state of my bone, but they seem to assume if I'm not at work, I'm at therapy for some strange reason. "How's therapy going?" is one of the regular questions I get.

Because my illness is not automatically noticeable, I tend to get into a lot of uncomfortable situtations in public settings. For example, I can't hold doors open. But, no one holds doors for me when I kick my foot into the gap when I pull on the door with my left hand - but I don't want to over use it, so I use my foot as leverage to get the door open enough for me to get through. And then, people behind me expect me to keep it open for them. Well, I would LOVE to be your personal doorman, yes I would. However, I do not qualify as I am an alien being from a planet where bionic implants are an everyday feature in people's lives. (shakes head)

Things haven't been great, but they haven't been bad either. I guess I just wake up and try to do it all over again without dying. I suppose that's what they call living day to day. I just call it fate. Well, I suppose destiny would work in there too...but destiny implies (usually) a more positive outcome so I'll just use fate as my placeholder there. I hope no one minds, and if you do too bad. Sucker.

Heading Back

I am alive, yes. I am also returning to work part-time. Does this make me happy? I don't know. Am I excited? Definitely not. The things I worry most about now are the facts that my bone isn't growing at all, and now I have to purchase some medical equipment called a bone stimulator that the FDA approves only for one time use, meaning this could be a risky investment if the bone decides not to grow at all, and also because I'm still in a lot of pain every moment of every day.

It has taken weeks to get the authorization forms from my doctor, and today I was finally able to get a copy of them and take them to my workplace. It has been almost 5 months since I've stepped foot in there and seen almost anyone from there. It made me extremely lightheaded and nervous. And now, I have to wait for word back from my department manager as to what schedule I will be working with my limited hours and days.

In the meantime, I'm silently freaking out that all this surgery has turned my brains to mush. I deal with this on a daily basis. All the medicine, all the pain, all the depression and loneliness, not just over the last few months but over the last few years, has left me incoherent, forgetful, and inconsistent. All of these things I am NOT KNOWN FOR. It's highly aggravating to say the least.

Talking about brain mush here, let me just say that aside from insensitivity or overwhelming me to the point of wanting to scream at you to leave me the [expletive of choice] alone... people that are impatient with my slow brain are seriously driving me bonkers. Yes, I mix things up. Yes, I forget things. Yes, I say things backwards. Yes, I cannot find the right verbiage with which to respond or just speak. It leaves me devastated that I know how intelligent I am, and people are treating me like I'm a foreigner who can't speak English, or like I'm not a bright person and that I have to be spoken to as if a child.

So, going back into an environment where I'm a big team player and a mentor makes me really dejected. People will be people and they'll continue to bug the ever loving piss out of me, but I'll have more than those small potatoes to deal w with. What if I can't remember to do my job? What if I can't cut it, and I just end up fired? It's all scary. I have to listen to my husband on one end telling me that (okay, not exactly his choice of words, I'm paraphrasing) I'm crazy and to stop being crazy. He doesn't think it's a big deal. Well. I just happen to be the primary bread winner during the majority of the calendar year, so yeas I must worry! I must worry that he's at school 4-6 hours a day, and then has another 4-6 hours of homework, and has to work part time, and has a band he practices with twice a week, and that's not bringing home the bacon needed to pay my medical bills, rent,  groceries, utilities, and our car. Granted, this is the last year we'll have to do this and believe me when I say I'm not letting him decide to go back to school in the middle of his life again while I'm stuck at the helm of this cruise ship dubbed doom ship. On the other hand, I have the people who are like "you're excited to go back to work aren't you?" or "it's so nice to have you back," which are BOTH designed to spear me through the heart and make me feel guilty for having a serious medical condition that put them out.

I love my job, don't get me wrong. I really do. I'm good at it, I enjoy it, and I feel like I make a difference ... most days. But I feel no one understands. Maybe the lady I know on my team who has cancer and was out for a few months for treatment might be able to somewhat understand, though she telecommutes so she's not around the people all the time.

 So I guess this is the point where I say I'm a downer all the time, and I worry all the time. That's my life. I can't change who I am. These things affect me 24/7. Kienbock's is a disease; it's not like a virus where it will just go away. Most days are tough. Most days I have to grit my teeth and pray that I make it through. It's not an easy life. Being on disability has not been easy either. It's been a trial in itself.

I don't know if you can comprehend my ramblings here, but if I don't get them out of my head, they poison my thoughts and my heart. It's better to unload them raw onto an invisible realm where people can sit around and judge how ridiculous I'm being. Right?

I Hope You Feel Better Too

You know the movie Happy Gilmore? Of course you do. Do you remember the "jackass" guy, Donald? "You will not make this putt you jackass!" I feel like the jackass guy every time someone tells me that they hope I feel better. I feel like a snarky comeback is what they deserve. But I don't. Usually I give them a disinterested half-smile and just ignore that they said that.

One time, in Germany, the woman I shared a hospital room with had a short conversation with me before she left the hospital. I was VERY depressed - like I have been almost every day since finding out about my disease. This woman was wishing me farewell, and told me to feel better soon. It was aggravating. It's about as annoying as someone telling a cancer patient that they hope they feel better. I think a cancer patient (having known several) would rather hear "I hope you kick cancer's ass!"

My disease is not a curable one. It is one that can be maintained, yes. The people who find out in the earliest stages of the disease are incredibly rare - and therefore extremely lucky. Their chances at maintaining the disease are a lot higher. They may never have pain again in their life. The reported population of the USA in 2014 was almost 319 million people. Of course, when you think about the roughly 150K people in the USA that have the disease, and probably half of them know it, the chances of someone being diagnosed early is about as rare as having a set of quintuplets naturally. (Which BTW, was reported by the NOMTC in 2011 as only 41 total in the USA. http://www.nomotc.org/). So think about that for a minute. If 75,000 people in the USA know they have Kienbock's disease, and only a fraction of them have been reported in the earliest stages of the disease (Stage I/II), we're talking like maybe 10-20 people tops, at any given time. Fractions of fractions equate miniscule percentages.

Why? Kienbock's is so rare, that doctors don't know about it, and don't know to look for it. It is commonly misdiagnosed for years or lifetimes. Less than 1/2% of the population has the disease. Think on that. That is a tiny number of people. The size of a small city like the size of Peoria, AZ or Irvine, CA.

Of course, not everyone understands this. They think that like cancer, Kienbock's can be fought. Well, sort of. It can be slowed down, maintained, or stagnated. People who are rare and lucky enough to have early detection will encounter this easily. They may have minor procedures or splinting/casting, and then they're good for most of their lives. But people like me are not so lucky.

People like me live in constant pain, fear and danger. Something as simple as turning the handle on something could break a bone or cause a major interference. Driving is a nightmare; I do it one handed mostly. I have to wear my big bulky cast to do it too, and it makes preparation and defensive driving nearly impossible. I dread anyone ever hitting me while I'm driving the car. If I'm holding onto the wheel, it could shatter my bones because they are so fragile and thin from surgeries, calcium deficiency, and sawing them in half.

It's really quite frustrating that people want to "mean well." I get it, I really do. I hope that my friend who lost her father recently finds comfort and peace. It was a tragedy. But, I know she doesn't want to hear that. And I've been in her shoes. She, like me, wants to hear "That sucks!" Because it truly does. "I hope you feel better," is a brush off. You don't matter. Your disease doesn't matter. I'm not really interested in how you are, but I want to me happy so you be happy.

SMH

Look, the next time you're around a friend who suffers from MS, cancer, diabetes, IBS, chronic pain, or anything else ... you tell them what you really think and feel. Tell them you love them, trash the disease and have a rant-fest, give them assistance without asking, hug them or hold their hand and be heartfelt. If you don't care, don't say anything at all because in their heads, their mind is reeling the same comebacks mine is, and then they will smile at you and nod, or just say "thanks" because they have nothing nice to say. They'll make every effort to get out of your presence. They're replaying every moment in Happy Gilmore where Happy is told he's a jackass and wishing they could hold your head down in the toilet to give you a swirly.

I hope you feel better too ... you jackass!

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.

The Misconception Is ...

I would love to be able to tell everyone that asks me that I have Carpal Tunnel Syndrome. I would love to be able to say "Yes, why I did break my arm. I fell off my bike." I would thoroughly enjoy saying to people "No, it doesn't hurt."

Kienböck's disease is not something you talk lightly about in small talk. I get sick and tired of every single person at stores who question me, and then proceed to make absolutely no effort to assist me. I mean, put the damn detergent in my cart already! It's a long and difficult disease to discuss and I don't want, nor do I have time, to stand here and discuss this with you. It's a lot like someone's cancer journey. I say this not to belittle cancer, but to compare the length of conversation regarding condition. I mean, you don't just walk up to someone wearing a pink ribbon (in example) and say "How's your breast cancer going?" Or even "You have breast cancer?" It's a history, a drawn out story of obstacles, choices, setbacks and accomplishments. It's similar for Kienböck's disease in that respect.

Look, I would LOVE to educate the public on my rare disease. It does affect people, albeit a VERY SMALL PERCENTAGE of the population. But, we're still people. We still have lives, jobs, families, livelihoods, etc. Even though there are probably less than 200,000 of us in the US alone, and it's very likely that almost none of us will ever meet another person in person who has our disease, we are still people. We still matter. Our disease does count.

The problem I have, however, is this: It's not something simple like asking about the weather. If someone is in a leg cast and they're waiting in line in front of me, I just assume they have an injury and leave them the hell alone. Not my business if they fell off a boat, down the stairs, off a skateboard, or anything. I just think to myself that they're leg is injured, and move on. I don't strike up a conversation and say "Hey, that's a bright pink cast you have there." It's like waking up and seeing that the sky is blue and the grass is green. It just is, accept it, and move on.

It's exasperating to have to explain to every single person who asks. Why? A) They don't know you, and likely don't really care. B) Everyone else asks the SAME QUESTIONS. C) It's none of your business. D) I don't know them or feel comfortable telling them I live with a dead bone in my arm in excruciating pain. That's medical knowledge between me, my doctor and my family. I don't like thinking of it constantly, or being reminded regularly.

The misconception of having Kienböck's disease is that it's something people want to talk about. Just because you have a cast on, you want to tell your story - or something weird like that. Well, it's NOT CURABLE, SO NO, I DON'T WANT TO TALK ABOUT IT. I get sick to death of talking about it.

So, next time you're standing in line at the grocery store, or you're interacting with people at work, or you meet someone somewhere that has a cast or a splint or a brace.... they're a human being. They're not a robot question station. They know you from diddly squat and would like to be left in peace. Let them just live their life and go on their way.

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.

So, there is still (surprise surprise) no known cause of Kienböck’s. However, there are more documented cases then there were in 2009 when my disease was discovered. That doesn’t mean there are more published materials or that doctors know new information because largely, they are still in the dark due to the rarity of the disease. Moreover, since I’m female, I fall into the minority of cases, which makes it a little more difficult because believe it or not, women have different bone structures.

Still, most doctors and therapists have not heard of the disease. In my current occupational therapy, interns from the local colleges who are completing their occupational therapy degrees have never heard of it – in class or in their books. This is rather unfortunate for me because I had to seek out the top hand surgeon in my region and request that he look at my case before deciding to take me on as a patient. Dr. L is very knowledgeable on the subject matter as he is one of the best hand surgeons in the country and has done a lot of research that is unable to be conducted at my laymen/patient level. Kienböck’s is listed as a rare bone disease due to the extremely low level of population affected. There are still fewer than 200,000 known cases in the U.S. alone.

Here’s an interesting tidbit: A study done on Kienböck’s disease could only be completed on 50 patients. I’m sure that every single one of them would be happy to know that their cases are all extremely different since Kienböck’s is no appendectomy. (Ha-ha, medical humor!) BUT, there have been interesting developments. Synthetic lunate replacements are NOT working. That’s what I find promising. There are some small developments that are helpful in determining what treatment procedures should be done. Since Kienböck’s is a highly degenerative bone disease, this could help people like me in the long run because this is not a cheap disease and it is life altering.

Dr. L is hoping that with my recent pedicled vascularized bone graft that the lunate can be saved, which is #1 priority with any Kienböck’s patient. The problem is that at some point, a large percentage of people with later stage Kienböck’s will have to have it removed or fused. Dr. L knows that my condition is bad and is very honest with me that my prognosis does not look good. I see his concern with my pain level as maintaining the state of the disease to where it is manageable. I agree, it needs to be managed.

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.

Europe Bound - Vacation Time!

With everything that has been keeping my husband and I so busy, it's difficult to find time lately to keep myself motivated to blog when I have a million other things to do. This MAY or MAY NOT have been precipitated by the anniversary of my mother's death, my 11 year wedding anniversary, and the planning of a European holiday with our exchange daughter and her family, as well as some much needed city hopping on the continent. So as of Saturday morning, we will be on a plan headed to our adoptive homeland, Germany.

In the past I have had travel issues when flying alone with my disease. The airlines I flew were not very helpful in assisting my disability and caused me outrage when I was seated in the front of the plane in an aisle seat with baggage overhead that I couldn't put up or get down. Since this time I am traveling with my husband, this should not be any issue - but hey ... we already found out that they are no longer feeding you any meal on transatlantic flights when my husband called to tell them I have some severe food allergies. If you spend $4,000 on plane tickets IN COACH to Europe, and the flight is 8 hrs or more, NO FOOD FOR YOU! (Gargantuan eye roll.)

Anyhow, we shall be cavorting around Europe for what we know will be a relaxing vacation before my big surgery. More on that soon.

Rough Around the Edges

I don't pretend to be anything that I am not. I try always to be myself. But, it seems, no matter what I do ... many people do not like me. I'd say that that is fine with me, but really I don't think that it is.  At first, I might seem very collected, very intelligent, very nice ... and then you get underneath the protective layer and there's just me. Naked in all my rough edges.

I don't think that perfection is humanly possible. In fact, this world in itself is an imperfect place. We live with famine, disease, natural disasters, and evil as examples. so, I take pride in my originality and uniqueness. I think that the continual strife towards perfection is ridiculous to say the least. I have Kienbock's disease, and I can't dribble a basketball, I can't throw a Frisbee, I can't drive like everyone else, I can't go rollerskating anymore, I can't scrub dirty dishes, I can't push myself off the ground ... what are we doing torturing ourselves? Everyone has things that are wrong. Why push perfection?

I figure, if I go through life only doing my best and being my best - that is the achievement worth the fight. Granted, I think we should all make ourselves better. I'm continually reworking myself.  For example, I used to hate when people played jokes on me. Now, I am slowly learning to accept the consequences of having "real" friends who know the importance of humor, laughter, and equality. None of which can be achieved if we aren't a little goofy and sneaky.

I let Kienbock's disease define a part of my life. I own it. I respect it. It has taught me many important lessons, and it gives me many important challenges. I know that with my disease I can educate other people, and teach them about degenerative bone diseases and how it affects the human body. I let the Kienbock's be a part of my person, my psyche. I am no more or less than any other equal, yet I have something they may never have and it sets me apart and I accept this.

The worst thing for me is desperately wanting to be close to people, but ultimately ending up disappointed no matter what. Everyone lets me down in ways I need them the most. Often, I don't know what this is but I sure as hell know what it isn't. People might think that this is something they understand ... but I don't think I know anyone similar to be honest. I am dejected over the fact that I can count the true and real friends that I have on one hand. I would like it to be two. I would like people to care. I would like for them to want to know me, to respect me, to respect my differences and opinions, to share a friendship with me. I would like people in my life, but I fear my rough edges often prevent this. I mean, I say completely weird and/or inappropriate things at crucial moments, I act out, I beg for attention, I shy away from attention .... it's all a weird carousel ride in my world.

I know that I am not perfect, and I don't want to be. Perfection is not a fun aspect of human existence, and I reject it. But, I do know that I always have room to grow, time to change, and space to just be me. No matter what.

It's Funny When People Don't Care

It's funny when people don't care to keep listening, to keep reading, to keep asking. At work today, I realized that after telling a co-worker I had a bionic arm (that no, I cannot karate chop people with), his lack of questioning me and my scar was hilarious.

I normally wear sleeves to cover up my scar. Mostly from UV rays, but also because people used to stare. Rudely I might add. My husband's former soldiers in the military would just sit there and stare, and then he'd say something like "You looking at my wife's arm? Yeah, she committed suicide." They would become incredibly embarrassed by this. This last year, I haven't worn a sleeve to cover up my scar. Mostly because the nature of my work doesn't afford the opportunity of gawking.

So today, when he questioned nothing about me, my life, or my disease, I found it hilarious. Why do we place so much value on what people are hindered by? We shouldn't. People can't help a lot of things. In fact, there's very little that people can control. You were born into a family, a country, a culture, a religion and environment that you had no say over. It's ironic that we think these things matter so much when in fact, they matter not because the luck of the draw could have been ANYONE.

To him, it didn't matter that I have a bone disease. I wish I could be more like this and not care, but when it affects everything you do in your physical interactions on a daily basis, it's hard not to consider it something to care about. True, if he had asked questions I would have acquiesced and answered him. I'm not a person to shy away from questions no matter how difficult they may be unless I feel lines are crossed.

It really is funny that there are those rare people in the world that don't care where you've been or what you've done - because I have only ever met one honest-to-goodness person like this. It's funny that they are so hard to find. I'd love to find more of them. Judgement reserved, accepting people. I need real humanity, friendship and acceptance. I need people to stop rushing how long it takes me to do things, to stop commenting on the shortcuts I take, to let me have my chance to do it myself, and so on.

I might own my disease. But I don't want to be judged or labeled by it.

A Visual Aid

Too many people don't think about the consequences of their current actions on the future of their bodies. An example might be that many people have become diabetic due to poor health and diet choices. An extreme example would be that some of these people will lose toes, feet, maybe even a leg because they did not take care of themselves.

Kienbock's disease is not an easy disease to describe, or to live with. I remember being 8 or 9 when an aunt contracted a staph infection in her leg that also became gangrenous and very dangerous. That, along with other things that occurred to her, put her in a wheelchair for life. That didn't have a whole lot to do with poor health and diet choices, but I remember when she came to live with us. She was not a strong person by any means at that point in her life. She was very angry all the time. She would refuse help, and then cry for help. The simplest things like talking or picking up an object were torture to her. It was embarrassing and depressing for her.

Though my trials are not at all the same as hers, I can sympathize with her stages of grief and control. Over the course of 9 years, I had slowly become more debilitated by the diseased bone in my body. When I think about it today, I can see how rapidly it progressed. In fact, if a doctor had (AHEM) caught it in time, they might have been able to save my bone from trauma of blood supply loss, and the further trauma of collapse and disintegration. You never know when things like this will enter your life, and that the effects they have can be drastic, and thus your emotional response very erratic.

Kienbock's is a disease. Kienbock's is not something curable.

Every day, I alter my body, my movements, and my reactions. Some of the worst things I deal with are rather embarrassing to say the very least. My number one struggle in life with my bad arm is anything bathroom related. I am going to challenge any and all readers now with visual aids. Think about it for a second:
When you sit on the toilet, do you sometimes push yourself back up with the counter or a bar? Do you have to adjust your body to wipe? Do you have to undo your pants? What about pulling them down and pulling them up and re-doing them? Do you have to lift the toilet lid and/or seat or put it down? Do you have to lock a door, open a door, or close a door? Do you wash your hands? Do you use one hand to pump soap into the other? What about wiping your hands off, do you use on major hand to wipe the other off? Do you air dry your hands by shaking the water off? Do you have to use or applicate feminine hygiene products? Do you ever change out the toilet paper roll?

These are all simple, thoughtless actions people utilize when they have to use the toilet. These are all things that give me grief every day. In fact, one of my deepest fears is that one day; someone will have to retrieve me from the bathroom because I can't care for myself. My fear has been realized once, though it wasn't bad and I'll share the story.

The Christmas I've been telling my story from, is when it occurred. It was evening, and my husband and his parents were on the second floor of our home. It was probably dinner time, or we were playing a game. I excused myself to use the restroom. I distinctly remember wearing these blue fleece pajama pants with big black and white snowflakes on them, and a fluffy blue sweatshirt with my arm strapped to the front. I was no longer in a cast, so it was wrapped in thick bandages. I went up the stairs to the bathroom that was the easiest for me to use. I managed to wiggle out of my pajama pants and sat on what I thought was the toilet. To my utter horror, the toilet seat was in the upright position, and I had just plunked into the toilet like it was a pool, my left arm bolt straight out (it was like my antennae for the seat, and still is). German toilet bowls are enormous and have a very thin rim. Water sloshed everywhere. I screamed, and tried to scramble (one handed) out of the toilet and fell over onto the floor almost on top of my broken arm. Needless to say, my husband raced up the stairs to find me trying to get up and pull my pants up (I didn't know if his parents had followed him.) I was crying and almost hysterically livid. To this day, no one will fess up to who left the lid up - something I'm positive I had asked to be a consideration following my surgery.

I completely understand the emotions behind helplessness like my aunt felt. How can a stupid think like a toilet seat mean the end of the world? Now I know. What if my in-laws had followed my husband up the stairs? What if I had broke my other arm, or landed on my broken arm or ripped the wound open? What if I had received a concussion? It made me angry, hurt, scared, defiant, powerless, and sad.

My Kienbock's disease almost certainly occurred because of a pre-condition, but there are millions of people in this world who can make choices about their health and bodies. My message from this is that humbling yourself is not always what will solve problems. Making the effort to rid yourself of destructive behavior will beget better and happier circumstances and memories than falling into a toilet and feeling miserable. If you have the power to change you r situation, what are you waiting for? There are those of us who cannot. The ball is only EVER in your court. Pick it up!

Nervous much?

Well, since I had been finding out the tiny bit of knowledge and research there is out there about Kienbock's Disease, I started to get really nervous. There are several different types of "treatments" for Kienbock's depending on the stage you are in, and the severity of your bone conditions.

My radius being significantly longer than my ulna was causing the intense, literally bone crushing pain. Dr. P. said that if we didn't relieve the pressure on my hand bones (aka, carpal bones) then worse things would start happening. His goal was to stop the degradation of the collapsed lunate and potential development of further fractures or avascular necroses while also attempting to slow down the eventuality of arthritis. Now, once you develop arthritis with Kienbock's Disease, you're pretty much screwed. I mean, yes, I have permanent damage and I will be permanently disabled and I will deteriorate over time ... but lucky me this is not a fatal disease. Just a crippling one.

So, the first order of business in treating my Kienbock's would be a join leveling surgery. This would even out the playing field for any doctor treating me in the future. So, what is joint leveling?

It has nothing to do with joints. Joint leveling is the process of mathematically extracting a portion of bone in order to shorten it, or to cut the bone to lengthen it. They were literally going to saw my bone in half, take out a sizable chunk, drill holes in the entire bone, secure it by screwing it back together with a titanium plate and screws. Mind blowing, right?

Well, needless to say I was antsy. I wanted to get this surgery over and done with. I wanted pain relief. I wanted to start the process of dealing with my disease. I wanted a lot.

This is when the eye twitch started. I called and scheduled my surgery for Thanksgiving Day, November of 2009. See, Germans don't celebrate Thanksgiving like Americans and Canadians do. In fact, most Germans think it's all cliche like on the TV or in the movies. The last 2 Thanksgivings we spent with our German neighbors who had never eaten turkey, stuffing, pumpkin pie, or green bean casserole. This year, I had an eye twitch, and an itch to have a small, intimate Thanksgiving prior to my surgery with my husband.

Well, I had this eye twitch the entire 3 months before my surgery. It was a pain the the butt to say the least. I wear contacts normally, but was remanded to my glasses. I went to the eye doctor before surgery to get my regular check-up, order new glasses and contacts, and to complain about the eye twitch. There was nothing he could do. He said it was an unconscious bodily response to my nerves regarding my impending dissection.

I love school. I love music. I love teaching music. For some reason, I felt like I lived in a blur this entire time. I have no idea how I got through school, teaching music lessons, and recording my music (just in case the surgery rendered me incapable to play ever again).

I worried non-stop. My family has a history of allergies to anesthetics. I've had my fair share of problems. Once, I had a cavity when I was 18. I went to the dentist so they could drill it out and fill it. They gave me 6 shots and I still hadn't numbed so they just drilled completely through my tooth and filled it. It was the most horrific experience I've had at a dentist, and has scared me away from them forever. When I went in to Atos to to a pre-surgery screening, they asked lots of questions and I tried to tell them about my family's allergies. Come to find out later, they never understood what I was saying ...

I also had my husband take me into my school to get me registered as a disabled student with student affairs, and to the bank to tell them I wouldn't be able to use my right hand so if I signed checks or came in to bank, they had a note on my account. It's permanent now, just in case something ever happens while I'm still banking with them. They're nice about that.

One of the weird things I was worried about was my handwriting. I have always been complimented on my neat, legible and pretty handwriting. I'm no Renaissance woman with a pen or pencil, but I do pride myself on having nice handwriting. I kept asking my husband if my handwriting would change. I didn't want it to change. I also asked him if I'd have to re-learn how to use my hand and arm. He had no answers to anything.

I didn't stop being nervous even the night before my surgery. I ran over to my neighbors and asked if they would take my dog for the next day and night. Their little boys love my dog. Although the boys speak no English, I taught my dog some German commands - and my dog was used to playing with them all the time anyways. My neighbors in Germany were wonderful. We had 4 sets of neighbors that were were really friendly with, and then there was Anne and Benedict. They were fabulous. So, when I went freaking out about my dog, Anne gave me a present. I now had a lucky pig, which I took with me to the hospital, and that I usually keep in my bedroom by my bed now.

In spite of all the nervousness and fright I had been slowly building to a climax, I still wanted to do this. If you don't treat Kienbock's disease, you run the risk of further complications. I'd spent the last 8 years getting worse because no one took care of it. The nerves might have been hard to handle at times, annoying to my husband, annoying to me (stupid eye twitch!), but I was ultimately set. I wanted everything fixed. I wanted my life back.

Kienbock's Disease: 101

While I was home thinking about surgery and making plans, I did some research on my condition.

Kienbock's Disease was only discovered in 1910 by an Austrian Dr. Robert Kienbock. He was a radiologist who was a pioneer in x-ray technology. He thought, originally, that Kienbock's was a result of malnutrition and tears in the ligaments and blood vessels.

Kienbock's Disease has no known cause, even today. There are many conjectures over what could possibly be the cause, and the two most viable conclusions are: a pre-disposition or a direct physical trauma such as falling on your hand (his includes repeated physical traumas). Because the lunate is so small and in an awkward position, it is rather difficult to cause the bone to collapse or fracture so these are the most widely accepted causes of the disease. In fact, less than 0.05% of the population has, or will have this disease.

In my particular case, the likely cause was a predisposition for my radius to grow abnormally long, and because I had two accidents in a very short time period (one a football accident, one a car accident) this could have cause the trauma that fractured and collapsed the lunate. This is according to Dr. P. my specialist, and Dr. R.'s contact at Landstuhl's orthopedic clinic.


The progression of the disease has 5 stages I, II, III-A, III-B and IV. There are many definitions of each stage; no one has a universal set explanation. My stage has been identified as III-A. This is the stage where the lunate is dead, it has collapsed, but I have not yet developed arthritis from the bone disintegration/movement/upset. In my stage, there is dramatically limited motion and range in the hand and wrist.

Typically, Kienbock's develops in young persons. Most people are in their 20s when it is discovered, but the typical age range is 20-40. More often than not, Kienbock's Disease affects the dominant hand. There are rare cases where it affects both as well. Mostly, people who have Keinbock's are predominantly men.

Some people will have a positive or negative ulnar or radial difference (meaning the bone is longer or shorter than it should be). This causes the bones in the wrist and hand to be disrupted. So, Less than 1/2% of people have Kienbock's Disease, and I am an even smaller percentage who has a variable bone size in my arm. This makes my disease state somewhat unusual, but not uncommon in Kienbock's.

Most doctors have never heard of Kienbock's disease - even in orthopedics. Mostly, a specialist in hands will be the only ones aware of the disease. While taking physical therapy, I worked with 3 certified hand therapists. Two had heard of the disease, and only one had ever worked with a patient with Kienbock's before, just one person in their entire career had ever had the disease. Additionally, they all had to conduct extensive research on the under documented disease in order to know how to treat my condition.

Symptoms of Kienbock's Disease are wide and varied, and commonly mistaken for other conditions. A few of the most widely reported symptoms are:

wrist pain
wrist swelling
tenderness
intense stabbing/crushing/throbbing pain
pain and difficulty moving the wrist in any and all directions
inability to use hand normally
stiffness
broken or fractured bones
arthritis
bone movement
bone collapse
bone disintegration
clicking in wrist or hand with movement
chronic pain in middle finger, or between the middle and ring finger
weakness in wrist, hand, grip, movement
inability to sleep due to discomfort or pain
inability to do simple/sedentary actions


If you have questions directly related to Kienbock's Disease, please feel free to ask. I will answer to the best of my ability.

Atos Klinikum and Dr. P.

Remember that fancy hospital I was talking about the other day? The one downtown Heidelberg that looked like some government building? This was the next stop in my journey. This was where I learned about Kienbock's disease.

So Atos Klinikum is a rather small hospital in comparison with American or university hospitals. I mean, there's this hospital called Theresiankrankenhaus (literal translation: Theresa's sick house) in downtown Mannheim that takes up a whole stinking block. Also, I'd been to the famous Army hospital in Landstuhl down by Rammstein for a GI appointment and some scope work the year before. That is also a huge hospital. You even have to go through security to get in.

I'm a little off track here. So, we park in the underground parking garage, and take the elevator to the main floor. We're looking around and this place is like a 5 star hotel with a Pharmacy that looks like it belongs in Donald Trump's house, and a restaurant with affordable and delicious local fare, and finally a gift shop and in-patient center. The floors and columns are all marble, and there's a grand foyer section where the middle of the entire building is open up to the greenhouse roofed ceiling. You can see all the way up to the top floors, and they can look down on you. The elevators are completely glass all the way around, and you can see all this artwork in between floors while you're going up ... and we did because we went to the second floor. Or, in Germany, what is called the second floor but is really the 3rd floor because they don't count the ground floor as one level, but as "Erdgeschoss", literal translation: earthen level. We learned this moving into our house because we lived in a 4 story home and had to tell them 2Nd level for the top floor, even though in America, it's the 3rd floor. Okay, again, off topic.

So we go up to the floor where the orthopedic clinic is, and we enter the office to find it's rather normal - more like an American office than the other orthopedic clinic we went to. It has a small waiting room enclosed in glass dividers with a closing door so the doctors and nurses don't get distracted. The counter is right when you walk in, so I tell them in my best German that I'm Mrs. Cushman (you always refer to yourself formally when dealing with strangers in an office setting - name tags always say Herr and Frau instead of first names). I tell them I'm to see Dr. P. They check their lists, and then have me fill out some paperwork. All over the wall when you come in, opposite the check-in desk, are these (what we Americans would think) grotesque pictures of foot and hand injuries. This office strictly deals with feet and hands. The doctors here are preeminent specialists in Germany.

We waited quite a while to see Dr. P. Mostly because the clinic was jammed with people waiting to be seen. This was obviously a very busy hospital. My husband and I always bring something to do with us, so of course I whipped out my school books and started reading, and my husband tried to sleep. When I was called back to a room, the girl asked how well I spoke German and I told her I can speak well conversationally, but not medically. She told me not to worry, everyone that works at that hospital is required to know 3 languages, 2 besides German and most all of them can speak English. This is because in Germany, unlike America, English is a requirement that is begun in the 4Th or 5Th grade and is continued, usually, for 7 to 10 years depending on the length of schooling and type of school.

So, Dr. P. waltzes in shortly after, and speaks perfect English. He's better than the immigrant doctors commonly employed by the U.S. military (often spouses of military members) who speak English every day with every patient. Anyway, he takes my disc of X-rays and prints out the pictures. He's not happy with what he sees, so he sends me downstairs to get an MRI. Now, usually, you have to schedule MRIs at a hospital. At Atos Klinikum, they do them on the spot, and results are immediate. I spent no more than 20 minutes down in the MRI. I didn't have to take any clothes, jewelry or even my belt off. Just my shoes. The woman running the MRI said she couldn't speak English, which really means she can but is fearful of her abilities and will only speak English when she completely can't understand you. So, she spoke German to me the entire time - which I'm used to but not in a medical setting. However, I've had many MRIs so I know what she's saying. Don't move. Squeeze this sensor thing in your hand if you need to stop or there is an emergency. Don't move. Don't move. I can talk to you through this headset. Don't move. You know that kind of stuff.

After 20 minutes, she sends me back upstairs to the radiology clinic to get my results. Again, I wait maybe 5 minutes and a guy comes out and takes me back to a computer. He speaks perfect English too. He shows me my results, talks to me a little bit, and then sends me back to Dr.P.

Dr. P. is floored. We have a lengthy conversation about my fracture. He tells me this is called an avascular necrosis of the lunate and a significant radial difference. Rough translation into laymen terms: There are these tiny bones in your hands. One of them in the middle of the bottom row of bones is lunar shaped, and thus called the lunate bone. This bone, which is critical to movement of the wrist, has died. There is no blood supply (hence the avascular). Because it is completely dead and fractured, it is going to, at some point, decompose and break down in to tiny bits. They cannot restore blood supply to this bone because of the extensive damage. This is an extremely uncommon disease. There isn't much known about this disease because of its rarity. Additionally, my case is even rarer than normal because I have a radial difference. This means that the radius bone (the inner arm bone) is longer than my ulna (the outer arm bone). This difference is likely what caused the bone to die as it pushed and crushed the bones in my wrist as it grew.

Dr. P. starts telling me the different stages of the disease. He has listened and exclaimed over my entire medical history with this issue since 2001. He is horrified that no one ever took an X-ray, that no one ever found out what was wrong, and that they lied to me for years and years. His expert medical opinion based on my symptoms, my X-rays and now my MRI results, and a light physical examination, is that I am in stage 3-A. There are 4 stages of the Kienbock's disease. 3-A is pretty bad, but not as bad as 3-B or 4. I'll get more into the actual disease soon, but Dr. P. says he recommends a radial shortening considering my stage and condition.

We tell him we'll think about it, and that we will call when we make our decision. I made the decision that weekend this HAD to be taken care of, but waited a full two weeks to call the office and schedule surgery.