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.

The Adventures and Misadventures of Vacation 2014

I, Kienbock's Girl, have had several adventures and misadventures in the last few months.

My husband and I took my hard earned vacation time to go to Europe and spend time with our exchange daughter and her family. We planned since our daughter left us to visit her this year. Back in February, we bought tickets, and started planning a vacation that ended up taking the 4 months before to plan it out entirely ... and then of course we didn't stay on the schedule we created, but we never do as we add and delete as we go with the flow. So, we spent 2 lovely weeks with our daughter, and a week with her family. Overall, it was a very good vacation but I learned some things.

1. Always travel with the husband - do not fly alone.
2. Only fly with Iceland Air if you're going to Iceland. The seats are too tiny for a normal sized person let alone a 6'1" man with gigantic shoulders, they make you follow ridiculous overhead luggage sizes, and they don't feed you any food (you must pay) and give you drinks 2 times in an 8 hour flight.
3. When flying, attempt to find affordable seats in business or 1st class - or pay for a last minute upgrade if available.
4. When flying, even if the doctor tells you not to take it, take lots of ibuprofin. 
5. I sincerely dislike Belgium. Beautiful buildings, great history, but dirty/stinky cities with some poorly mismanaged transportation systems and no sense of direction combined with expensive food made it a little difficult to fall in love with. 
6. Always travel like a local. I mean, I already knew this, but I knew it even more since I'd never taken the train outside of Germany when living there. 
7. Our exchange daughter does not always like to go to many museums on vacation and spend a lot of time looking and reading everything like I do. Find her a bookshop and you're golden.
8. Buying laundry soap in the ghetto of a French speaking country is not exactly ideal.
9.  Don't let Belgian buses kidnap you. ENTER FROM THE FRONT - they're not the same as Germany!
10. Belgian fries really are better.
11. Vacation isn't a time to relax - it's a time to get out and do stuff!
12. Candlelight wine cruises through Amsterdam are fun. They're even more fun when they stop for a short tour of the Red Light District, and a couple mysteriously disappears from the remainder of the tour.
13. Buying tickets online to the Anne Frank Huis might look sketchy (trust me, it looks sketchy) but it was an EPIC WIN. 
14. No one is kidding about the line to the Anne Frank Huis. By the time we entered (1/2 hour before it opened, we got early entry!), the line queue was around the building, and halfway down another block ... so an easy 2 hour wait minimum. By the time we exited, I'd estimate it was probably 2 city blocks long.
15. Speaking English isn't a crime or shocking to anyone in Belgium or the Netherlands. In fact, so much more English is spoken there than in Germany or any other country we've traveled to, it was like Spanish in America. Except that everyone could understand you ... and most Americans' Spanish is like baby talk. 
16. Take your internet capable phone with you. Even though you can't call people, you sure can e-mail or FaceBook them and post teasing pictures of you and your hubby and daughter.
17. Hotels in Bruges are cheap and SUPER nice.
18. Hotels in Brussels and Amsterdam are expensive and mediocre at best.
19. Renting an apartment in Brussels was kind of cool.
20. Renting an apartment in Brussels was kind of not so cool. 
21. If you forget to eat an unopened sandwich that you bought on the plane, the U.S. sniffer dogs will find it, and get you in trouble and have all your things looked through just to throw the sandwich away ... the sandwich that cost you about $12.

I'm sure there's more I could put here, but let me just say it was a vacation we'll never forget, and believe me when I say we took thousands of photos to prove just that. 

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.