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?

Things Must Change

DISCLAIMER: This is not meant to hurt anyone's feelings. It is not an attack. THIS IS HOW I FEEL. THESE ARE MY OPINIONS AND EXPERIENCES. You can't change that.


Since many people responded to my previous post in a way I half expected (dared to hope wouldn't), I would like to remind everyone who reads this that this is a blog about MY life, MY experiences, MY views, MY opinions. None of which is something that you can affect with words. So, I'd like to explain something about having depression and a borderline personality ... mothering them will not work. Telling them things aren't so, will not work. Giving them an "open door" will readily be ignored. And again, I am not saying this to hurt people's feelings. I'm stating the truth. It forces me to withdraw further.

I've spent my entire life reaching out, and floundering. This is something I struggle with daily. I've tried initiating friendship, I've tried carrying on friendship, I've tried being a good family member ....in all of these situations, I get walked upon. People lie, people flake, people don't want to be around me, people don't want to do the things I want to do - but when the tables are flipped, they expect me to respond. I'll give an example.

I was acquaintances with someone in college. I really wanted to be her friend; she was a really interesting person and someone I felt I could connect with over a weird interest in serial killers. (Since that is aside from my point, I'll leave you wondering.) One summer, she stayed at school. I called her and asked if she could come help me put together some furniture as my husband and I had just moved and he was working full-time and attending classes. She came over and helped me put together the dining table, the chairs, and a small coffee table. We got to talking about things, and she wanted to be a bone specialist. I explained I had a really interesting book on bones. It told this hilarious story about how Michael Jackson thought he could buy the Elephant man's skeleton - which is just wrong on so many levels. I ended up loaning her that book, and another one. On another occasion, we went together to Moscow to have her hair cut since she didn't want to go alone. I thought we were building a good rapport. That year in college, she wanted my support with a major decision she was making. I threw myself behind her because I really believed she could make change happen. Not long after this, she didn't get the position she wanted and I feel she blamed me and my husband for not being her champions. Shortly after this incident, she invited us to a costume party. My husband and I had spent most of the afternoon fighting, so neither of us was in a good mood and we couldn't put costumes together in time. We called and told her we wouldn't be able to make it, that neither of us was feeling very good and that we were fighting, maybe it was best we didn't make her party awkward. This was quite truthful. I think if we had gone, we would have been fighting a lot longer than we could have been. She stopped talking to us much after that unless it was out of convenience. We never received invitations again, when we'd ask her to do something she was always too busy to spend time with us, but not other people, she never returned the books I loaned her, and then a few months later, she moved to the other side of the country to attend graduate school. We've never heard from her again.

This is a pattern in my life. Like it or not, I can give someone every reason to believe me, to trust me, to be kind to me, I can reach out, and then suddenly it's gone. Often without explanation. This remands me to keep to myself. I stop asking anything, and thus I never get anything. I become infuriated when people think they know how to fix me too. I don't want to be fixed. I don't want to understand YOUR view. I don't live in YOUR world because my problems are mine. They stem from me and MY environment. Not yours.

I don't want people's pity. I don't want people's feeble attempts to open doors. (And I say feeble because in MY experiences they have all been feeble, never honest.) I hate to say it, but what I want is someone to just know and then act. Yes, I'm a woman and yes that means in some cases you are expected to be a mind reader. I'm sure everyone can relate to that, but what I am saying here is that I often don't have any idea what the hell it is I need. I don't get it from my family, and I don't get it from the people I know. Often, the only person in the world that can give me anything is my husband. And, he's got enough on his plate - I hate pressuring him to do more. He's been so wonderful that I can't just dump on him anytime I feel like. In fact, he is NOT a punching bag or a trash can. This is something I expect other people to automatically accept without explanation. He can't always be the one.

Finally, my speaking out about my views and my experiences isn't here for you to judge or change my mind about. Things have to change. I'm not some five year old that you can get to believe in Santa, I'm a 30 year old woman with a husband, a degree, a career, 2 home businesses and medical problems. Consolation does not come in the form of "wishing" things for me, or telling me "that's not the way it is." It makes the issue(s) worse. So what is my motivation for doing this?

My getting rid of the poison in my heart, I can be free. THAT, is worth the pain and heartache in the end because at the end of the day, I know who I am and that is all that I want to matter.

Cars and Bones and Other Fashionable Rides

After high school I spent a year to myself. I went on an exchange program to Germany, and I worked a full-time job at my uncle's engineering firm. I went to college the next fall at Washington State University. I enrolled in the school of Music as a Music Major. My primary instruments were piano and flute - I've talked a little bit about this before. In the year that I spent away from school, I recovered from my neck injury. It wasn't a fun process let me tell you, but in October of that year, a full 4 months later, during a storm, I hydroplaned into another car who was merging onto the freeway in downtown Seattle. I wasn't going more than 15 miles per hour, but such a low impact jarred my neck badly, and I remember holding onto the steering wheel so tight, that my arms were straight out in front of my trying to brace myself for the whip backwards. They had a tiny scratch on their car, but I was the one worse for the wear.

I sometimes wonder if this is what caused the bone in my hand to collapse - it would make a lot of sense. Low impact car accidents are absorbed by the passengers of a vehicle. Hitting a car at low speed can slip a disc for example.

I'm not a bad driver, but the last few years have made me extremely afraid to be behind a wheel. I haven't had a car accident since this time, so 12 years later when an act of nature called black ice took me careening for around 600 feet downhill into a rock wall planter, I wasn't surprised to find out I have a slipped disc in my lower back. It is highly plausible that such an event as a small car wreck could cause a radial difference to have put intense pressure on my hand bones.

Today, driving is still not enjoyable. I lost that sense of adventure years ago. I mostly drive with my left hand. Things like changing gears, adjusting the rear view mirror and turning the wheel are all obstacles when you have Kienbock's disease. If I do use my right hand, I rely on my fingers for grip and my arm from about my elbow for the control I need of the wheel.

When it comes to other forms of transportation, I seriously have to weigh the cons before I step away. I do own a bike, and I do like to ride it. The problem is though, that using your hands and arms for balance and direction is key. I can no longer ice skate (not that I was EVER any good), roller skate, roller blade, or skateboard/mountain board if I wanted to - not that I do but just as an example. People who fall from these modes of transportation used their hands. It's an automatic reflex if you wobble; you put your hands out. Additionally, I have to rule them out because you cannot trust other people in the world.

I remember in elementary school, every year our school would rent a roller rink and we'd have a huge school party (I went to private elementary, so this was not a large amount of kids). One year, I recall being hit so hard from behind that I fell and was knocked out. My parents wouldn't let me skate for the rest of the day. I mean, think about it. People bump other people, people push and shove, people sidle by.... cars are on the road, animals are on the road, the weather can be drastic, etc. Deciding to go for a bike ride or a rollerblading adventure would just be plain stupid of me. Distractions and invaders are everywhere. I'm not paranoid, I'm practical. It's not worth risking the loss of the use of my hand to go ice skating. If I fell and landed on my hand or arm, I could do some real damage that might not be repairable in ways it would be for other people. I have an extremely thin radius and calcium deficiency because I'm lactose intolerant and have to rely on other foods or vitamins for calcium.

Some people might not understand how this is living life. They'd say if I wanted to do something, to just do it. But, as a realistic and practical person, this is stupid advice. The only way you could do these activities would be in a controlled environment - something many people don't have access to in their everyday lives. As much fun as owning a gym like WSU has, I'd really just rather say it's not worth the risks involved and find other avenues to pursue.

At the end of the day, I never regret my choices to stay out of harm's way. I know I cannot control everything, but I can avoid situations that make it dangerous for my physical health.

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.