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.

Therapeutic Creations

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

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

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

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

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

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

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

Shaking Hands Sucks

I have always hated shaking hands since I was little. I find it intrusive. Hand touching is something you should only do if you know the person extremely well. I've also found it a symbol of intimidation. When you go on a job interview, you have to hold your ground in a handshake - it's not about being polite. It's about how firm and strong you shake, and how you guide that shake.

Yesterday, I attended a memorial for an aunt of my husband. She died last Sunday, and so we went to a park where a bunch of family gathered to say a few short words about her, and have lunch together. If you think I have a problem shaking hands, you haven't tried to hug me ... but everyone wanted to shake my hand yesterday afternoon. It drove me nuts. No one cares that maybe I don't want to shake hands. Maybe I have germs, or just maybe I have a degenerative bone disease?

I don't know how many people's hands I shook, but I felt instantly afterward a fatigue in my hand. In the past I have proffered my left hand - only to end up getting weird looks. And, how do you excuse refusing a handshake? I hate hugging, so you can understand that I didn't want to refuse a handshake because then they would hug me. I suppose I could spend my entire life hiding behind my husband, but why would I do that? If I refuse, I either have to a) explain b) get hugged. I neither situation, I am in a position I don't want to be in. In either situation, people think you're weird. I'd rather just raise my hand and say hi. Why can't that work for everyone?

If I could do away with one thing in human society, it would be the handshake.

When I woke up this morning, my hand felt like I had slept on it backwards. All from handshaking. Maybe I should walk around with a giant foam finger on my hand. That way, I wouldn't have to shake hands. And when people offered me their hand, I would refuse to take it off. And when they try to hug me, I could just hit them with foam.

Yeah.

The Land of Fallacy

So now that I've scared the crap out of everyone with my last two posts, perhaps people might understand where I am coming from a little better when I say that I have issues when it comes to dealing with the effects of Kienbock's disease.

Yesterday, I was having company come over to do my hair. When company comes over, I tend to go into panic mode and clean. This stems from living with my parents for 19 years. My mother was a borderline hoarder, and my dad is just a pack rat. He'll say he can use something, and then it disappears for a while into the black hole that is the garage ... only to reappear one oddly random day in use. I feel like when people come to my house, they shouldn't be overwhelmed with all the skeletons in the closet. And, I have a complex about smelling good. Not just me and my body, but my home. This can be difficult with animals and a husband - but believe me when I say it was worse in the military with smelly pro-gear everywhere.

So anyhow, I'm sticking dishes in the dishwasher and since I can't scrub them so well, I let them soak. Then, I wipe down all the counters and fronts of the cabinets - again, as well as I possibly can. Then, I get the broom and pan out from under the sink. Since it's tiny and I have a slip disc in my back, I kneel on the floor to sweep the dust and crumbs into the pan. How many times and with how much emphasis can I say BAD IDEA? I realize as I'm trying to move around on the floor, that this was incredibly stupid of me. I have to scoot around. We've suspected for a long time that I have Kienbock's in my other hand, and I for certain have tendonitis in it. So, I can't use it as my support or leverage. As patient as I may appear most of the time, I panicked. My M.O. in this type of situation is to get really angry with myself. Most people who read this probably haven't been to my home, but all I had was the counter, which I could reach, but wouldn't have been able to pull myself up considering how stressed my left hand and arm were at that moment. On the other side, I had dining chairs. I wanted to cry at how stupid I was being. I managed to stray from breaking the stove and cabinet doors, and made it to a chair that I pulled out and pushed myself from my elbows up with. 

After this, I felt completely ridiculous. What if I was stuck there? Some days are really good and I can push myself up, but other days, like yesterday, I act completely stupid and panic over something silly. No one was home and my phone was nowhere near me. I always think about how much worse it can be. I'm a glass-is-half-empty kind of person. If you don't prepare yourself for the worst, then you won't know how to react. Treat every situation as if it's just the stepping stone to the worst possible situation, and you will be prepared.

this may seem totally counter to what I just told you happened, but once I got off the floor, I imagined having fallen or been in mortal danger, and unable to move myself. This concerns me greatly. It's entirely depressing so I just think about it constantly, unable to let it go. I stress that something one day is bound to happen; my outward actions of scrambling around to find something is what I deal with daily. If I'm driving, and I can't get the wheel to operate exactly how I tell my hands to do it, I freak out and think of the horrible things that will happen one day if I can't get my hands to work. I'm afraid of what I can and can't do. Ultimately, you cannot see me curling up in a ball, helpless inside my head because I know this disease will eventually disable me to the point where I can't help myself - and yes, this statement right there is me overreacting to my predicament. I can't NOT do that. I feel that way. Feelings are feelings, and I've found that no matter what I do, feelings are uncontrollable, but actions and reactions are more easily controlled. I have this extreme paranoia from my borderline personality disorder, and live in the land of fallacies. If one thing tips, they all tip. If I'm mad about one thing, I'm mad about everything.

I can't seem to make sense of anything because of my own obstacles within myself. I accept that I am what I am, and what happens happens, but I reject the control I can exert over situations. I can't even trust myself to do the right things or act the right way. If it's something as simple as being stuck on the floor I'm going to attempt to control it. And, when I feel out of control I panic.

Now that I am sharing more about the real me inside, it might be possible to see what a difficulty it is struggling with having Kienbock's, having depression and a borderline personality and what happens when combinations like this create havoc. If I could, I'd just lay all day in the same spot thinking, crying, and angry.

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.

Kleenex and More Deep Thoughts

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

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

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

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

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

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

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