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!

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?

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.

Hi. I'm Kienbock's Girl and I Suffer From Depression.

I remember being lonely from a very young age. I have a younger sister and a younger brother, hoards of cousins, a best friend I've known my entire life, yet I remember feeling lonely most of my life. I can't pinpoint exactly what it stems from, but I know there are many factors that contribute to my bouts of depression.

When I was 16 I contracted mono from sharing drinks with friends at school. Two friends who were dating each other had been sick for a couple of weeks, but didn't know that they had mono. I distinctly recall buying a Sprite one day for lunch, and they passed it between each other. We did this often in my circle of friends. If someone had a drink, you just shared. And, there were like 15 of us or so that this would happen with. That day, I shared it with the two of them, and then went to German class. A week later, my dad had to take me to the doctor because I couldn't stay awake, I wasn't eating much, and I felt like every day I had run a marathon. The clinic gave me that form they always give to patients to fill out asking what their symptoms are; what aches, what hurts, what stings, stabs, pokes, bleeds, etc. I checked a bunch of stuff on the list including headaches, itchy eyes, lethargy, trouble sleeping, trouble falling asleep, trouble waking up, exhaustion, wheezing, achy joints, and more.

When I went in with the doctor, they first gave me a blood test to see if I had diabetes. Then, she asked me why I checked everything off on the form. I told her (in what I am sure was my best 16 year old attitude) the form asked me to list everything I was feeling, so I did. They swabbed my mouth, took my temperature and then took 6 vials of blood from me. After this invasion, she sat down to "chat" with me. She basically told me that I was likely suffering from early forms of insomnia and depression - which are often linked. She told me she was going to prescribe medication to "regulate" my hormone levels.

Not long after this, we found out I was sick with mono. But, my dad starting taking me to a psychologist at the doctor's urging - over something completely unrelated which at some point I may be able to talk about more openly. After some time with the psychologist, she too believed I suffered from episodes of manic depression, but did not believe I was manic - that I just had a mild form that would peak at times. In addition to this, she also agreed that I was suffering from insomnia. I would literally stay up all hours of the night trying to keep my mind off of my life, my family, my problems, and my loneliness.

I was kept on drugs for depression for a few months. I only told 1 person other than my family that I was being medicated. Mostly, because when I was on the medication, I was not the same person. He thought I was acting extremely strangely. I would talk to complete strangers, I made dates with complete strangers, I would drive my car with one leg out the window (no, I'm not kidding), in social situations, I would be relaxed and indifferent, I would say things I normally would never have the gall to say, the list goes on. Ultimately, I hated the person I had become on drugs and so I quit taking them after a while.

In my view of my life, I have been a very inward person. I don't share the deepest parts of me with anyone. Or, if I do, it is a bit here and there and usually they're with my husband. I was brought up by a father who had no nonsense parents, and by a mother who was somewhat crazy but was someone you didn't dare cross. I did not fit either of these molds. I feel like my entire life, I've been nothing but a disappointment in the temperament and character they wanted in a daughter - though I'm sure neither of them could agree on what this would have been. Though I imagine it would be more like my sister for the most part. I have felt like an outsider in my family for as long as I can remember. My name doesn't help matters much. I have a completely unusual name, while everyone else has normal names. And, when I hear in my head my dad or mom saying my name, it accompanies a panic and feeling a tone of extreme disappointment

Not long after I was diagnosed with depression, I realized with my Psychologist that I have a Borderline Personality disorder. If you knew me at all during my middle, high and early college school years you will likely automatically agree. People who suffer from this almost always suffer from depression. They kind of go hand in hand.

My abandonment issues, my emotional state, my impulsivity, my history of intense and highly unstable relationships, my paranoia, my anger, my suicidal thoughts and behaviors.... these are all things that affect how I handle my bone disease. I feel like I have no friends who really understand me - and I am NOT meaning to hurt anyone's feelings with this statement. I feel that people don't make an effort to know me, to be close to me, to care about me ... so I withdraw, I hold back, I behave strangely. Ultimately, my mind says trust no one, but my heart desperately wants to. I cling to the only thing I know I have in the world, but fear that every moment with him is my last - no matter what he does or says to try and make me believe. I truly HAVE gotten better with this over time, I mean, 11 years later and we're still together has definitely taught me something. Every day I feel I can trust him more. But, it's not enough because I don't have an unromantic connection with someone that is like this. I don't have another person in my life that I feel would stand behind me no matter what, that would believe me, that would want me and care for me and love me in the way I need to be loved. My husband knows these feelings that I have all too well. He knows that every time I try to get close to someone or believe a relationship with them is going somewhere - it ultimately fails in every way because I couldn't get what I needed from it. And, I wish that having a husband were enough. Most days, it is. Other days, I can't take care of my home or my animals or myself.

All these issues and more are swirling in my head right now. I really feel like crying because I hold all this in. I don't know anyone other than my husband that knows all these things about me. In fact, I don't really know why I am sharing this with my audience here - the few people that do read this. I believe there is a reason, but I just don't know what. But, I am hoping that by cleansing myself of this fear, this sadness, this depressive behavior - that I can finally start feeling more whole as a person and start to heal in a way I need.

So Long Castie!

When we had returned from our excursion into the German Alps, I had an appointment with Dr. P to have my cast removed. We planned to take the whole afternoon/evening to stay in the Pedestrian Zone downtown Heidelberg, and to have dinner at one of our favorite restaurants in Germany: Indian Palace. So, we all walked down through our tiny town to the train stop. We had a lovely train that came every half hour during the weekdays, and every hour on weekends. It took us on what is called a Rundfahrt. It went in a circle from Mannheim to Heidelberg, crossing both the Rhein and the Neckar. We paid for our group ticket and took the next train into Heidelberg. Our train stopped right in front of Atos Klinikum, if you recall which is directly across from the entrance to the Pedestrian Zone.

I remember I wasn't feeling good at all when we got to Atos, and we had to run around looking for a bathroom. All the bathrooms on Dr. P's floor were in use, so I finally found one on the floor below. It was literally a closet. I mean, the average sized human could barely turn around in it, and have space to wash and dry hands. When we ran back to the office, they had already called my name and shunted me into an exam room. One of the girls that had come to put on my cast came in with an electric saw.

Now, you can tell me how safe these saws are, and demonstrate it on your bare skin all you want.... but I blanched. With how close that saw was coming to my skin, I kept freaking out and repeated "Stop! Stop!" I don't know if the girl had massive amounts of patience, or was just entertaining me, but she would stop. The saw generated so much heat; it was burning my arm underneath the cast. We stopped and started many times before she could crack open the cast and let my arm out. Dr. P came in and told me to go over to the X-ray clinic and get some pictures taken. So, we left the office and walked across the hall to radiology. J&S were sitting outside in the hallway in some chairs waiting for us. We told them I had to get some pictures, and talk to the doctor and then we could leave.

I recall that this visit with radiology was none too pleasant. When a little blond lady took me into the room she tried manipulating my hand and arm in ways that made me want to scream and slap. I remember there was this pedestal in the middle of the room instead of a huge table like you'd normally see. She brought over this step ladder, and would angle me around the pedestal in awkward positions. The x-ray machine was mounted directly above the pedestal, and she'd pull it all the way down. If I had flinched, I probably would have whacked the machine good. After a good 10 minutes of grabbing my hand and angling it this way and that, she had me sit out in the hallway by J&S and wait for the prints. Surprisingly, the entire ordeal took less than 30 minutes from beginning to end, walking in to radiology, having my x-rays, and then receiving my prints.

We hustled back into Dr.P's office and back into the exam room. He came in shortly after and said that things were looking a little better, that the stress on my hand bones had been drastically reduced. He gave me a "prescription" to take downstairs to the Pharmacy for a new brace. He said that I was to wear this brace 24/7 for at least the first few months, but let my arm have some air time a little every day. He said I had to sleep with it on. Still no lifting, cleaning or driving. But, he said once my wound healed and the scabs fell off, I could fully immerse my arm in water again.

So, we left the office and we all went down to the museum-like first floor where we walked into the Pharmacy. The lady that took my note said in really quick German that we needed to go to the shop across the hall. Okay.... the shop across the hall was like a gift shop. My husband just shrugged and we went into it, and found that there was a bundle of people on the wall facing the street that were setting people up with bandages, braces, etc. So, we took my note to the first available person, and they told us to wait. It was quite a long wait. Turns out, they had to contact our military insurance to make sure that I could receive this special brace for my arm. There was a whole debacle over it that my husband tried to handle, but we mostly did not understand what they were saying to us ... but we got the brace after about 30 minutes so I guess no harm, no foul! The fitted it on me, and told me not to wrap it too tight. Then, they gave me this interesting receipt. By interesting, I mean this stupid brace cost 80 Euros! At that time, that was about $120 or so. I couldn't believe how expensive this stupid thing was!

My brace is blue blue, with green piping, and red interior. It is not in the least attractive, and goes with absolutely nothing I wear. Or anyone would wear. I still use this brace today. It has a large metal bar insert that is to shape my bone and hold it in place, and Velcro straps that keep my wrist from moving. It's fabulous to sleep it, but took a lot of getting used to. It's hot, sweaty, and not at all breathable so it can start to stink rather quickly which means you have to wash it regularly.

So, Castie, you are no more. Fortunately, I now do not have to worry about itches and showering. The clunker you were ... will not be much missed.

Special Guests

I had just barely gotten over being incredibly sick and was left with a horrible cold that stayed in my nose when we went to pick up my husband's parents. The Christmas of 2009 was going to be an incredible holiday. My husband had taken 2 weeks off of work and gotten Christmas off, and we were going to spend it with relatives which is something we hadn't done since 2004. Additionally, I had this awesome travel outline where we were going to drive down to the Alps and stay for a few nights, visit Austria and some famous Christmas markets, and see some local sights and eat some delicious food.

The day they flew in, my husband drove us to the airport about an hour early. Frankfurt airport is one of the busiest airports in the world ... and one of the worst layouts with the worst parking. It's not Germany's fault really, it's just that Frankfurt is central to EVERYTHING in Europe, that it's just so convenient. They're working on the infrastructure though, so the DB trains will come through a special station just across from the main terminal. So, we're driving around this huge new structure (which will also include lots of businesses, places to eat, places to stay, etc.) and we successfully found a parking garage with vacancies. This is rare. Anyway, our "Rock star" parking luck was on our side ... right next to the elevator. Like literally, a step away.

It took us about 15-20 minutes to get through the whole airport to where we needed to pick the in-laws up. Frankfurt airport is humongous but there were only 2 international arrival gates where we waited. We waited through 2 plane loads of people while standing up before any space was left vacancy for people to sit. I saw a group of people leave this huge fountain, so I ran over and snagged a spot, took off my coat and laid it next to me. My husband dawdled over but insisted on standing. It was about a 40 minute drive to airport, and it would be 40 minutes back so he needed the standing time.

I don't know how many plane loads of people came out of customs, but I think it was something like 8, and we waited for about an hour and a half. When you arrive at Frankfurt, you have to walk like a mile to get to the international arrivals desk for them to check your passport. Then, you have to wait about 30 minutes for your luggage to even appear on the carriage, and then you have to brave the potentiality of customs ... but, we've never had problems with going through "No Declarations." (Knocking on wood.)

Anyway, by the time J & S (my father- and mother-in-law) came through the door, we'd been at the airport for more than a while. My arm was sore and still swollen. I sat cradling it while my husband kept an eye out for them. I didn't get up until I knew they were through the gate because I didn't want to get jostled. People it Europe are rather pushy and it's acceptable so I just tried to stay clear of the chaos. It worked out pretty good though because they were some of the last people out of the gate rolling some huge luggage, and when I got down off the fountain, I didn't have to worry about being pushed and shoved around.

I was still on a lot of medication for anti-nausea, muscle relaxers (That Dr. R. insisted I take when I went to get the anti-nausea medicine) and of course, about a thousand things for my stupid head cold. I had to blow my nose every 5 minutes so I was also carrying around a box of tissues in my purse. Then, every time I blew my nose, all the skin would get rubbed raw and I had to apply aloe vera lotion after every blow so I didn't look like a burn victim. I probably looked like the mess I felt like. But, at least I felt well enough to go with my husband to get them. We had plans to leave the next morning too. We were going to be headed to the Alps to Garmisch-Partenkirchen (GAP) where we had reserved some rooms in the Edelweiss Lodge - a military only destination on the NATO base in GAP.

It was still morning time when we picked up J & S, so afterwards, we drove to the base in Mannheim because we wanted to get them a special pass so we didn't have to go through the long verification process for guests on the military base every time we wanted to go do something or get something. So, we go to the office, and sit there for about 20 minutes before they tell us that because we don't live on the base, we're not eligible for these ... which are totally ridiculous. We're stationed there, and the base isn't one huge fenced in lot. It's 5 different tiny little fenced in lots around the city! And, I repeat: WE WERE STATIONED THERE! Of course we're going to need to go to the post office or the commissary or the PX or anywhere else! It was totally, insanely, absolutely dumb.

Pissed off, we headed home. My husband and I had gone the day before and gotten the Christmas tree from a little tree farm on the highway to our village. After J & S got somewhat settled with their luggage upstairs in our guest bedroom, we planned what to do for the evening. We wanted to decorate the tree, but we also needed to get supplies for the road tomorrow. It was a 4 hour drive to GAP, and it could be slower due to the snow and ice. Also, we wanted the tree done before we left so it wouldn't blow away in the gusty wind. Living on the mountainside, we'd seen this happen to our neighbors' Christmas trees and it was funny until it happened to you. We didn't want to leave it outside the 5 days we'd be gone. So, we packed up the car and went to get some groceries at the commissary. When we came home, we spent the evening hours listening to Christmas music, rearranging the living room, putting up the tree and decorating it.

With my arm in the condition it was in, I was limited to what I could do to help out with the whole decoration situation. So, I sat on the couch carefully unwrapping ornaments with my left hand and three moveable fingers on the right hand. I tried to carefully put the hooks on the ornaments while my husband, J & S decorated the tree but some of their impatience with my inability to keep up with hooking the ornaments led them to doing it themselves and hastily putting them on the tree. It didn't really annoy me at the time, but as I look back it was something I realize that would happen to me a lot with this disease, and it doesn't make me the happiest person.

After we got the tree decorated and the living room back to order, I had a pain episode. I would get these a lot, but I think that the excitement of the day really got to me. I remember I was sitting on the couch and the next thing I knew I was screaming and crying sprawled across it. Imagine the worst pain in your entire life, and it probably still wouldn't compare. I was used to pain, but the next few months - these episodes would pop up out of the blue and I'd be in so much pain I couldn't breathe or speak. Nothing helped either. It was completely rotten, and I was incapacitated every time this happened.

Thinking back now, it must have been extremely frightening for my in-laws who had almost no idea what was going on. My husband would often turn sheet white and helplessly ask what he could do. I remember my in-laws tried to ignore it at first. They were quiet, but they would talk amongst themselves and continue doing what they were doing. It must have scared them that badly ... and since nothing helped and they knew it, the best thing to do was to not stop and drop everything but to continue with whatever was going on.

Personally, looking back at these episodes, I had no choice but to revert to the most primitive state of humanity when it came to the pain. I couldn't control it, and it would happen often at night when I was most vulnerable and exhausted. I had gotten used to taking naps, and I didn't get one that day and that possibly could have made it worse because I had no strength.

By the time it had subsided it was time for bed. My husband had to finally start sleeping the same bed because we only had one guest bed and our air mattress made his back hurt. I remember being so angry with the whole pain thing that when my husband brought up a load of clean laundry that we had to fold before bed, I started screaming at him over the way he was doing laundry. Basically what had happened is that since the surgery, he was doing most of the housework. He had put in a delicate (yet machine washable) lace tablecloth that was handmade in Italy, in with regular clothes. Some of the hooks on my bras had gotten tangled in the lace. I was pissed off that he wasn't careful with the tablecloth and also that he didn't ask me how to wash it. I know I was mean and harsh.

Every now and then, I'll have moments like these. I can't control everything anymore, and it makes it hard to let go of. Especially when it comes to things I could change the outcome of if people would recognize that even though I can't do something physically, they can still talk to me about it.

I apologized to him the next day, but he told me there was nothing to forgive. He understood my anger and my frustration and I loved him for it.

Having special guests was going to be hard. I hadn't dealt with my inability to use my arm, or the possibility of permanent nerve damage or physical disability. Anger would get the better of me more often than I liked.

Castie

My husband and I had been planning for months to fly his parents to Germany. See, years and years ago they were kind enough to help us out with our wedding granting us a small sum of cash on which we modestly married. We thought it would be kind to repay their loving favor by giving them a vacation of a lifetime. We bought their plane tickets, sent them packing lists, mad a budget with them, and planned the entire vacation which would be roughly 3 weeks long.

Well, we obviously had to plan my surgery around this vacation. Believe it or not, I had my surgery 2 1/2 weeks before they arrived. I was still entirely miserable and recovery was going hard and things just kept getting worse.

Three days before we were to pick up my in-laws, my husband took me to Dr. P.'s office to get a cast. The girls putting on my cast didn't speak hardly any English, so I was relegated to the duty to notify her if the casting was too tight or too loose. Those words were 'eng' and 'weit'. Putting on the cast wasn't easy. It kept getting too tight, so she'd have to loosen the material and cotton and start over. I didn't get a choice in color (like you would expect in America) so I had this basic blue clunker which I dubbed castie.

It was actually much easier to bathe with castie since all we had to do was tie plastic bags around my arm and tuck them in really tight so the cast wouldn't get wet. Of course, my husband still had to do all the washing but I started to help more now that I wasn't holding up the rubber arm.

The day before my in-laws hit the Frankfurt tarmac, I came down with a vicious fever. I have never had a fever like this in my life. I was doing my usual afternoon routine of lying on the couch and watching a movie when it really hit. I'd been feeling terrible all morning, and when my husband came home, I migrated from the bedroom to the couch with all my fluffy German pillows and down comforters. It's a Friday afternoon and I didn't have any obligations as I had already finished my schoolwork and I had canceled giving piano lessons until January.

It was around lunch time when I began to feel like I was in a sauna. We had huge windows in our living room, but it wasn't really a sunny day and it was December in an area on the same latitude as Calgary, Canada. Needless to say it was cold and there was snow on the ground. Our ambient floor heating never worked very well, so I knew something was wrong.

Of course, being the worrywart I've always been, I began to imagine something was terribly wrong with my arm. I have metal allergies, what if my body was rejecting the titanium? What if I have an infection? I realized by 3pm that day I had spent 8 hours unable to breathe and in an intense feverish state. I began to panic. I couldn't swallow, I couldn't eat, I couldn't breathe, and I couldn't get cool enough even after I opened up the windows to the winter air. I debated for about an hour whether or not to call the lady who lived a few blocks away who brought her children for lessons every Monday afternoon. I finally had to decide against calling her because I wasn't sure if this was an emergency, and she would be out at the Heidelberg Kaserne (military post) picking her kids up from school.

At 3pm I gave up and woke my husband up. I told him I'd tried to get my fever down but I didn't know if there was something wrong with my arm. My temperature kept reading 107 degrees and I wasn't able to breathe or swallow. He checked me out for himself and decided that we should go to the emergency clinic at the Heidelberg American hospital.

Well, that stupid castie got in the way for sure. We sped as fast as we could on the Autobahn to get to the hospital in time for the emergency clinic to see me before they closed. We told the doctors I'd just had surgery and that I was suffering symptoms similar to what I was told to watch for when it came to infections. Now, I know I was delirious. I was really on another planet. I was horrified to find out that after telling them about my 107 degree fever that had already lasted 8 hours was only a really bad flu. I think they wanted to laugh at me.

Fabulous.

I really thought something was really wrong. But, they kept assuring me that it was better safe than sorry. Then, they tried to send me away. I sat in the waiting room while they were trying to release me in absolute discomfort. I was pale, shaky; I couldn't breathe and couldn't stay warm or cool enough. A nurse came out to check on me about 30 minutes later and said that I was much too miserable to send home in the state I was in.

Thank God!

They took me back again and I told them I wasn't able to eat or drink anything all day because I was so miserable and that I'd had the fever all morning. They put me on a saline drip, drugged me up with Motrin, Tylenol and Sudafed, and then let me sit through 2 liters of saline before they sent me home with a bunch of medicine to keep me fever free.

Of course, the entire time I was at the hospital, my husband was hanging over a chair passed out. Since there weren't any other serious patients at the hospital, one of the nurses rolled a bed over by mine and let my husband sleep on it. He got about an hour of sleep which was really nice of the nurse to allow him. I made them check me for bronchitis before we left because I had just recovered recently from a bad bronchial infection that lasted 3 months, and with my family's history of severe bronchitis, I wanted to be safe.

I don't know what to think about this hospital visit really, because I was so delirious. I don't even know if I'm remembering it correctly. I do know, however, that I was scared out of my mind. I've had family members with MRSA infections, so I know the severity or infection and contamination. It's frightening to think that if something had gone wrong; my arm could have gone gangrenous. I'm lucky in many ways, but I think the flu that day was the best diagnosis I'd had that year.

Rubber Arm

We went to see Dr. P. for a follow up appointment the week after I left the hospital. They took off my wrap. I had no idea that there was a half cast supporting the underside of my arm until they took everything off completely. My fingers were still not working, and I had to support my arm by holding it in my other arm to move it around. It just laid there on my leg palm up for most of that appointment.

Dr. P. checked the wound. It was all still black and extremely red. IF you weren't careful, you could glance at it and think I'd just taken a blade to my arm like Claire Danes on the Royal Tennenbaums. The glue was still holding the skin together.

Dr. P. also checked my sensory. He'd touch an area of my arm and I would feel it in a completely different place. It was still numb, like not even half awake. I couldn't really feel that he was touching me. He would ask me to wiggle each finger, and the only ones moving were still 3, 4 and 5. 2 was sort of twitching, and my thumb still wouldn't work. He said he didn't know what was going on, so he explained what happened in the procedure.

When you have an area operated on that has lots of muscles, tendons and nerves, they have to pick them up and move them out of the way before they can operate where they need to be. Basically, they took what looks like a binder clip to keep them away from the bone so they could saw and drill. Dr. P. said he thinks that this could have traumatized my nerves and that could be why there is poor response even after the anesthetics had flushed my body.

I ask him what the likelihood is that I'll be able to return to normal sensations and movements; he says that my condition is unusual. He thinks that it could take as long as 3 months considering my symptoms.

After he chatted with us, he sent us over to X-ray across the hall. I walk in with my wound wide open for everyone to stare at ... and they sure did. In Europe, staring is not associated with stigma like it is in the U.S. People love to observe others. It's actually considered rude to break eye contact if you're caught staring and act like you're doing something bad. It's acceptable to stare at anyone, for any reason. It's just something you get used to. On the one hand, it's not really that bad. They're never staring to make judgments or talk about you like Americans are. It's actually easy to get used to. However, when you walk into a room full of people with what looks like an attempted suicide wound that is screaming for attention, it gets incredibly uncomfortable. I knew I looked like a pathetic, bloated, sad person and it really looked like I attempted suicide.

I was happy to have to sit there for only a few minutes when they took me in to the X-ray. A few minutes later I was back in Dr. P.'s office, my husband clutching the X-ray photos and I delicately embracing my wounded arm. Dr. P. came back in and looked at the X-rays, said they were good, and that I should expect the healing process to take anywhere from 1 to 2 years. That meant, my bone growing back together. Only after it did could they remove the stabilizing screws and plate. They then wrapped me up and sent me home.

We went home that day with instructions to take my arm out of its wrap and half-cast to wash. I don't know if this was worse than the 3 straight weeks of nausea, but it was bad. I couldn't control the arm so I got really freaked out when it would flop around. It was like there were no bones in it, and it scared me. I kept thinking the screws are going to come loose or the plate will shift, or my bone will break and fracture further. It was horrifying to watch it wiggle around like rubber and not have any control. It also did not feel good. It was awkward and painful to say the least considering the mound of metal holding my arm together, and the skin glued over it.

Honestly, I think it scared my husband more than me because I'd get so freaked out I'd cry when he'd give me a bath. We lightly washed around the wound, but never over it. I wasn't allowed to soak it because of the glue holding it together. We had to pat it dry and make sure that it was completely dry before we wrapped it back up. But, he would charge through with his duty to take care of me. Usually, he feels helpless and doesn't know what to do because how can someone really do something about the pain? When it came to baths however, no problem. He was very careful and very good with me.

I don't really know how to describe this "rubber" arm to you. Not many people have had surgeries where their situation would be similar. I would best describe rubber arm like a newborn baby's neck. If you're not careful, it jerks and flops around dangerously. Let me tell you, it was the worst of the weird feelings in my arm that I've ever had when it comes to my Kienbock's Disease.

I Can Do Nothing All My Myself

After leaving the hospital, things got difficult. My husband had to work all the time and we were expecting his parents to arrive in 3 weeks. I had class and I also taught music lessons to 6 kids during the week. Additionally, we lived in a 4 storey home, and have a dog. There just wasn't anyone who wasn't busy or exhausted who could do anything.

My husband had to take over all my normal duties around the house - which was no easy task. I practically laid in bed or on the couch all day unless I had to give lessons, or use the computer. Okay, I'll be honest. Using the computer was horrible, I didn't really use it ... I massacred it. I'd go check my email, check my facebook, check my bills, etc, and all of this would take so long because I couldn't type and I couldn't use the mouse with my right hand. I wasn't great with using the mouse backwards, and I often threw fits because I'd screw something up.

Take for example the day I was trying to do bills. See, I have this system where I check the bank balance online every day, input anything into a spreadsheet that we do our balance on, and then make sure bills are set up for payment on the 1st or 15th. Since we were in Germany, this was very important to do every day. And, to also check the daily exchange rates so we knew if we could get Euros or not. So, I'm doing this, and I have a difficult time keeping from clicking the wrong thing. So I'm clicking around on a site where I'm paying on our bills and because I'm trying to use the mouse left-handed, I hit the wrong button. I paid the bill twice because I accidentally left the payment page, went back in, pushed the paid button, and it said that I had two pending payments. Needless to say I get really frustrated.

Throwing fits became somewhat regular. The pain was intolerable, and I got hardly any sleep because of it. I had to constantly take baths and could only take them when my husband was home because I couldn't wash myself, I couldn't get in and out without his help, and I couldn't shave. That was awful. So, I'd have to wait until he came home at 7 in the morning, and then until he'd get up at 2 or 3 in the afternoon. I taught him how to wash my hair and face, and then he'd scrub the ever loving crap out of me. Since the surgery I'd been sweating a lot - partially because of the pain and partly because of persistent fevers. It's important to me to smell good - or at least clean. I hate feeling gross and since I'd never been sweaty like this in my life, it made me angry and self-conscious.

I'd also have to wait for my husband to cook, to clean, to do laundry, and to do my schoolwork. I took classes with a university that has a division specializing in military overseas. It's a nationally accredited university, founded in the 1800s, so it's all legit and they're famous for their courses abroad. Anyhow, I worked it out with my instructor that I would dictate my assignments to my husband so I could get them in on time. It made us bother really mad. I have a schedule when it comes to school, and he is always a distraction - a good one though. Anyhow, we'd pull two chairs up to the desk, He'd find the assignment in the classroom for me, and then I would dictate my answers. I think really really fast, and I type really really fast. My husband, on the other hand, takes information very slow. He'll think it over very carefully. Well, his careful mind and my speedy one did not mesh well. I would dictate to him, and he'd interrupt to ask a bunch of questions, and then he'd type slow and tell me I was talking too fast. Believe me, this is no way to write papers. I'd yell at him that I couldn't control the situation and that the least he could do was keep up, and he'd yell at me and tell me I was being mean .... We did this every assignment until the class was over. It was not conducive to my learning astronomy mind you, but we always made up afterwards and promised we'd try harder not to lose our tempers.

Things were rough for the next few months all together, but I think that whole winter was like living in hell. I'd be in pain, I'd scream and cry all the time because I had no pain killers, and then the nausea came. That was the worst. My family has allergies to anesthetics - remember my tooth drilling? Well, I knew that because of the block and the sleeper stuff that I'd had a lot of anesthetics pumped into me. I took to eating crackers and soda or water all day every day. Any time I tried to eat a regular meal, I'd get sick. I spent an entire two weeks in complete nausea before my husband had a day off and could take me in to see Dr. R. I was miserable, and I knew that she would help.

So, I go in to Dr. R. with my husband. I tell her that I haven't eaten a proper meal since before the hospital, that I've been puking every day and that I've had constant nausea that I can't get rid of. She tells me in her posh British accent that she'll fix me right up, and then says she'll throw in some pain meds. I'm only supposed to take the nausea pills when I feel nauseous, and only take the pain pills when I'm in pain.

Well, I can tell you honestly I took none of those pain pills. I'd gotten so used to nothing working that it wasn't worth it to pump more crap into my body and risk getting sicker. So, I took those anti-nausea pills when I needed to, and they worked. I'd get nauseous, pop the pill, and in about 2 hours, things would be better because it was just the pain then.

I was relegated to doing absolutely nothing all the time. It got boring really fast since I couldn't hold a book open or get comfortable enough to read, I couldn't play my Wii or PS3, I got much too frustrated to use the computer, so I spent most of my days napping and watching movies. It was pretty bad. If I wanted a drink, I had to get my husband. If I wanted a change of clothes, I had to get my husband. If I wanted to move something or I spilled something (which happened a LOT), I had to get my husband. I took to wearing exercise and pajama pants all the time so I didn't have to get him to take me to the bathroom and I only wore tops with bras built in so he never had to put them on and take them off - which would be too difficult with my arm. I think the only things I could really do were open and close doors, put on my house clothes, and carry small objects like my ice pack. It was horrible, demeaning, and just plain annoying.

My husband tried to be supportive and compassionate, but he was either at work, or sleeping. He did take good care of me the few hours he was awake. He wouldn't sleep in the same bed as me for fear of hurting me. When he came home from work in the mornings, he'd make sure I was up before he went to bed. If I wasn't, he'd wait until I was. I told him to stop being silly, but he didn't start sleeping in the same bed with me until I got my cast the day before his parents arrived. He spent 3 weeks like that. I loved him for it even though it was a little protective.

Doing nothing seems like it's not really a big deal, until you lose the use of your dominant arm completely. It was still swollen much too large, but the icing and exercising had helped me regain slight movement in fingers 3, 4, and 5. I couldn't move 1 or 2 still, they sort of twitched when I moved them, but progress was very, very slow and erratic at best.

Bloody Sunday

There really wasn't much blood on Sunday. Sunday was just my discharge day. I was only to spend 3 nights at the hospital, and I had made arrangements with my husband to pick me up at lunch time - we had asked the day before when I could leave.

A doctor came in that morning to check me, and told me to come back to see Dr. P. Monday afternoon. He said to leave my bandages on and wait for Dr. P. I could ice it, and I should still do my exercises since my arm was still a balloon the size of Texas.

So, later that morning, I ate breakfast alone as usual, got dressed for the first time all by myself ... which took about an hour. I brought simple tank tops with those built in bras so I didn't have to worry about getting a bra over my head or hooked, and the tank top was wide enough to easily stretch over my head. That and pajama bottoms were all I had brought except the jeans I wore the day of the surgery. I also figured that I shouldn't walk around in Germany in pajamas. No one does. Seriously, the only time I have ever seen a German in their pajamas was when I stayed with my exchange partner, and in store advertisements. I went into the bathroom around 9 o'clock to start dressing. My husband said he'd be there around 10. It took me the entire hour to finally get my jeans zipped and buttoned with just my left hand. Then, I went back out to my bed, sat on the edge and tried desperately to pull my socks on one handed. Yeah, that was no fun.

I was completely ready to go at 10 and there was no sign of my husband. Remember how I said that he went AWOL? Okay, so he's not there. So I start to slowly and awkwardly get my things out of the locker, put away my books and things into my back pack and moved all the stuff by the open door of my room. Germans don't bother things that people leave lying around so I wasn't worried my DVD player would be stolen or anything.

It was about 10:30 when I had everything all packed up and moved to the door. My roommate's husband showed up, they packed her up, and then they were leaving. She actually said goodbye and hoped I'd feel better. I told her I wouldn't (of course, she didn't know this because the entire time we roomed together, she only said she'd clal the nurse that one time!!!) They said "Oh," and then they gave me their best wishes and left. I kind of felt weird about that. I still do. I mean, if you room with someone for 3 whole days laying 5 feet from them, and you don't bother to try and talk when you know the person is helpless in a foreign hospital ... what do you expect? I know they didn't understand me but I didn't really care. I just wish that she would have been kinder as a host. I mean, she had been in the room a whole day before I had been. Anyway, they toted out her millions of flowers and gifts and left me sitting by the door waiting.

I got tired of waiting at about 11 and called my husband from the room phone after the nurses came and took my bed out of the room to strip it down and clean. He didn't answer. I don't know how long I waited, but I called him again on his cell phone and he said he was on his way. I told him he was late. He said he overslept - he did have to work the night before. And that night too.

I was irritated. I love my husband dearly and we rarely have any problems but this just aggravated me. I had been waiting at the hospital for 2 hours for him to show up. I had to dress myself, pack myself, and sit there. I'm sure he apologized profusely, but it wasn't really his fault. I was just in a lot of pain and exhausted. I hadn't taken a nap yet.

We leave the hospital and ride down to the garage. When we get to the car, I see he was thoughtful enough to remember to get the pillow I specifically asked for the day before, for the car ride home. We have this gorgeous bedding that is Moraccan themed. It has all these matching pillows with various designs that we don't sleep with, but use to decorate our bed all nice and pretty. I asked him to bring this roll pillow that's about a foot and a half long, and maybe 10 inches around. He helped me get in the car and put on the seatbelt without strangling or injuring myself. Then he hands me the pillow. I gently lift my arm and tell him to stuff it between my chest and arm so it lays on it. I had figured that driving home would involve quite a lot of jostling. If I wasn't careful, I could be in more pain or end up making the wound worse, etc. This was a pure genius idea. I left that pillow in the car for months to use as a rest/barrier.

When we got home, Ihad my husband settle me on the couch in the living room with blankets, pillows, a movie, and water. He went back upstairs to bed. It was a rare day in our house that I allowed this, but I let my dog up on my legs. He lay across them and cuddled me. I remember I watched that Lucille Ball movie with the trailer, Arsenic and Old Lace, and the Marx brothers movie where they're on a boat in a tiny room.

My husband got up not long before he had to leave for work to shower and get ready. He got me some crackers and a soda because I was feeling nauseous, kissed me, and left. He looked like he got run over by a semi.

After he left it was around 9pm. I finished what I was watching, then dragged my pillows up the stairs with me. I made a cozy bed with pillows piled high on my right side so I could elevate my arm. Then, I went back downstairs for the ice pack. We have this huge ice pack that is a square. It's like a foot by a foot, so it would wrap nicely around my arm. I dragged it and a handful of towels upstairs. I had an easier time taking my pants off than I thought I would, got into bed, wrapped the towels around the ice pack, and then around my arm, propped it up on the pillows and tried to sleep.

The Surgery - Part I

Most people know what to expect going in to surgery. I was an American in a foreign country, at a hospital where even the best English speakers don't act like the medical professionals from the states and tell you what you need to know.

I assumed (no, I did not make an ass of myself) that my surgery prep would take a while. My surgery time was 1pm. My husband, being the smooth talker he can be, arranged to trade days off with someone at work so he could be free the whole day. We dropped the dog off at the neighbor's' house and headed out to the hospital.

We get to the clinic a little before we're supposed to be there, and they take me back immediately. The clinic is rather small, and the surgery for orthopedics is in the same office. It's actually quite a small clinic. When you walk in, the desk and exam rooms are off to the left, the waiting enclosure is directly ahead, and the surgery center is to the left.

I kissed my husband, told him I loved him, and went with the nurse. She took me to the locker room where she told me to take my shoes off, take my shirt off, and put my purse and backpack in the locker. Now, this room is out in the open. Nudity is absolutely no issue in Germany. Nobody would pay much attention if someone was walking around in a bustier and thong on the street, so everyone walking around and working while I was undressing was just ignoring me as if I were a light switch. No problem, I don't really care anyway because I'm in a hospital - they see worse than a 26 year old woman walking around in her bra and jeans.

So, I'm waiting, topless for the nurse to come back when the front desk nurse comes barging in to the surgery center and asks me if I checked in. I asked if she meant the front desk of the clinic. She says no, downstairs. Oh. Well. This is why being American in Germany is difficult sometimes. They assume you know how their country works when it comes to certain systems. She tells me she already sent my husband downstairs; I should go meet him in the patient center.

Okay, so I hastily put back on my shirt and shoes and run down the two flights of stairs to the lobby and into the patient center. Apparently, we were supposed to check in there, before going to the clinic. Way to go explaining this to us Atos Klinikum. So, we sign a bunch of papers, we give them our personal information, we give them our insurance letters approving surgery and hospital stay (which I go to pick how long I stayed - oddly enough!) and then they asked me what I wanted for dinner.

After a brief 10 minutes doing all this, we were set free and we ran back up two flights to the clinic. We walk in and the girls at the front desk tell me to go on back and get undressed again. So, I kiss my husband and tell him I love him again, and once again proceed to undress and shove all my crap into a locker.

An older gentleman comes up to me. He's probably 40, but he looks younger. He brings me around the corner from the locker room into a small exam room and has me lie down on the table. So, there I am, topless, lying on a table with some man who leaves me for about 5 minutes, and then returns with a bucket of water. He tells me his name, but I can't remember it. He's the Anesthesiologist that works in the hospital. He's got on this super long white coat with his name embroidered on a front pocket. He's very nice, and speaks English very well. He tells me to sit up. So why was I lying down? I don't know. Anyway, he pulls up a spinning stool and starts unpacking a bunch of things.

They are going to try and do a block on my arm. What a block is in anesthetics is the isolation of a body part or region for numbing so the patient can be awake during surgery. I'm horrified. I specifically asked to be put to sleep at my pre-screen. This is what I was talking about the other day. They didn't understand my family's history of allergies with anesthetics. I tell the anesthesiologist this, but he insists this is what Dr. P. wants to do. But, he explains, they will put me to sleep if the block doesn't work. Fine. Whatever.

So, this guy has me stick my hand in the bucket of water and pump my fist several times. Then he lifts my arm out of the water, has me hold it straight up in the air and he prods my armpit. I do this a few times, and then he has me lie down with my arm over my head. Good thing I shaved my pits before coming in that day, right?

He starts pressing and pushing around in my armpit. He tells me he's looking for the nerve that will deaden my arm. He does this for a while and I lose track of time because it's incredibly uncomfortable and all I can think about is "Stop it!" It feels like hitting your funny bone, over and over. Only in your armpit. It's an awful feeling. I'm trying not to think about it, but then I think about how I don't want to be awake for the surgery and hear the bone saw or the drilling. Or see people moving around with bloody gloves.

When he's satisfied he has my nerve in a good spot, the anesthesiologist brings out this huge needle. He tells me to hold my breath and exhale slowly while he shoots the block drugs. Simple right? Oh on. No no. This was the worst experience of my life to date. I mean, the football injury was bad. But this was pure torture. He sticks the needle in, wiggles it around quite a bit trying to hit the nerve, and then he shoots the block in. I felt like I was going to die. My eyes started leaking immediately uncontrollably, and I tried to exhale as slowly as I could without getting all snotty in the nose - which can be hard to do when you're crying.

When he's done doing this, He forces me to move my arm around. This is just as bad. That nerve is so angry that it feels like a giant ice pick is stuck in my armpit. Moving my fingers hurts. Moving my hand hurts. Moving my elbow hurts. Everything hurts. Nothing he's doing to me is making this any better.

Then, he pulls my arm down and moves it so I'm tightly hugging myself across my middle. He tells me to keep my arm in this position, to hold it with my other arm so it doesn't slip, and to just wait. Now, again, I don't know how long I waited but it didn't feel like very long because next thing I knew, he was sitting me up and walking me across the hall and into the surgery.

They had me climb up onto this huge table in the middle of the room, and lay my right arm out to the side so it was directly horizontal with my palm facing up. Some guy got me a blanket and covered me up to my belly, then stuck a few suction cups to my chest. He asked me, in German, would I like to listen to music. I said sure. He asked if I liked a particular radio station and I told him it didn't really matter, that I like most all music. Plus, they already had it on Radio Regenbogen (Rainbow Radio) which is what my husband and I listened to in the car when we forgot our iPods, or they died on us. So this nurse guy turns up the volume on a stereo that's on the wall directly in front of me, while some other nurses and doctors start congregating around my arm.

One of the nurses pushes a cloth partition over my shoulder so I can't see my arm anymore. So, now, I'm laying on a table in my bra and jeans with a blanket that only covered my stomach, with like 10 people in the room. And I can't see my arm. I now know how it must feel to be in a C-section...

After everyone had come in, Dr. P. shows up and greets me. He asks for a scalpel and says he's going to make sure my arm is numb. I try to feel my arm, but it feels like it's only partially asleep. I can't tell, I can't move it. He tells me he's going to cut into me. Okay, I say.

Nope, definitely not numb yet. I can't really remember exactly how it felt, but I remember the pain. It was excruciating. There was pressure, and then pain. They waited about 10 minutes and then Dr. P. tried it again. Nope. Felt everything.

Okay, the block was not working. Ha! I didn't think it would. So, a nurse comes over to me and puts a mask over my face. I stare up at the ceiling while they pump the anesthetics in, and I remember falling asleep.

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.

Did the doctor just laugh at me?

There's this super fancy hospital in downtown Heidelberg. If you get off the Strassenbahn (street level train) at Bismarck Platz (where the pedestrian shopping zone is) and turn around, you'd never know the building was a hospital. It looks more like some sort of government building. I never really thought twice about that building, regardless of the fact that my husband and I were always down in Heidelberg doing something or other.

When I received my referral to a specialist, it was bizarre. I first had to go see a regular orthopedist in downtown Mannheim. The doctor's office wasn't like any I'd ever seen before, of course, I was in Germany not America. But, on my high school exchange program, I did visit a local doctor's clinic with my exchange partner - but that's beside the point. Anyway, I always love new experiences in Europe like learning about social customs or local traditions, etc. This was not an experience I was prepared for.

So the doctor's office (like every other office or house in a city setting in Europe) was up behind a storefront building. It was hard to find at first because there was no sign so my husband was merely going off the street addresses. We're both skeptical because once you get behind the building, you have to go up these narrow steps and then it's like you're in some one's backyard garden or something. We enter the building, and head to the second floor like the paperwork we got from our insurance told us to do. Once we get inside the actual office, it's more like ... an office. Nobody's wearing scrubs or coats. There's no check-in desk. There is however, what looks to be a closet with sliding glass doors that are obscured by its bubbled glass. My husband shrugs at me, peeks around a corner and sees a bunch of chairs and heads to do what else? To sleep of course.

I stick my head through these glass doors because really, there is no one else around in this office besides the two women chattering away and clacking at their computer keyboards. I greet them in German; ask if I am in the right place. A young girl, maybe 3 years younger than I am, confirms that I am and I tell her who I am. Then some burly German guy barges in through the doors and starts babbling about an appointment - so I know this must be check-in. It's just bizarre is all. I mean, this room is tiny to say the least, and I stood there for about 10 minutes filling out paperwork in German and answering a bunch of questions in German.

When the girl has finished my paperwork, I go to wait for my "Termin", my new word for my appointment. I apparently used the wrong word when I was making conversation but I'm used to German nuances for the most part - you know, being corrected in the middle of a sentence or conversation as if what you were trying to say depended on it - even when you don't ask or want to be corrected. Yeah.

Anyway, we must have waited almost an hour which is rather unusual for Germans who are known for their impeccable punctuality and timeliness. We are escorted to an examination room, and it too, is a closet. Literally. I mean, the one wall was full of cabinets with labels on each door and drawer, and the on the other wall was an exam table that I was sitting on - my knees were almost touching the cabinets. My husband could barely fit in this room - he's a big guy, over 6 feet tall with really broad shoulders and he was uncomfortable.

So, when the doctor comes in, he starts speaking English automatically. It annoys me when Germans do this. Their practicing English is WAY more important than your learning German. But, I suppose I can understand that medical issues and expressions are not commonly learned so perhaps it wasn't rude, just politely convenient? Anyways, it doesn't matter because I can't say "dead wrist bone" in German anyhow. So I tell the doctor what I was told by Dr. R. He doesn't understand what I am talking about, so I hand over a CD with my X-ray images and tell him that they took them just a few weeks ago.

After disappearing for a few minutes, and reappearing, he hands me the disc back and says there's nothing he can do for me. I say "what?" He laughs at me. "I don't know why your doctor sent you here."

Am I missing something? Did the doctor just laugh at me?

He explains that at his clinic, unlike in American orthopedic clinics, they merely do diagnosis, and minor treatment like casts and splints. We're talking these people only deal with regular old broken bones and sprains. Great, right? He wants to know why I am there. I tell him this is where my doctor sent me to get treatment. So, he thinks a moment and says he has a friend who is a specialist in hands who works in Heidelberg. He gives me the name of the clinic and our appointment is over.

After a rather harrowing experience waiting to get clearance to go see this specialist in Heidelberg, we are happy and have an appointment for the fall of 2009. I spent hours on the hospital's website reading about the doctors, the clinics, the famous patients from all over the world. Steffi Graf was a patient there. Rich business men from Russia come all the way to Germany to be seen by these doctors. I haven't even been to this place, don't even realize I've seen this place, and I like it tremendously. Little did I know it's that big building downtown in an area I know well and love.

Vindication

It is customary in the military, to try and get an appointment with a doctor for a serious issue (such as crushing bone pain) and not be seen for 6 weeks or more. However, for some strange reason, I was reassigned to a new primary care doctor even though my previous doctor was still at the clinic ... lucky me.

So, my husband usually had to take the day off to take me to the doctor (because at the time we lived 10 miles away from the military base in Germany), or go and sleep because he always worked midnight shift and never got enough sleep. Sleep deprivation is a huge problem in the military, and, in my rather biased but not unfounded opinion, is inhumane. My husband was worked to death while we lived in Germany. Those three years of work were miserable for him, so taking me to the doctor meant sleeping wherever, whenever, however.

So, at the clinic, we wait together. He's, as usual, tired as all hell and is desperately trying to stay awake to be supportive of me, and at the same time desperately trying to catch up on the last 2 years of sleep deprivation. But, unlike any other doctor's visit I have ever had, before the doctor will see me, she insists I go down to X-ray.

Well.

I guess I don't have to bring out the brass knuckles.

10 minutes later, I'm back in the doctor's office, and she's looking rather amazedly at my x-rays. She's looking at the screen, and in her sophisticated British accent says "You were right to come in. You've got a rather serious fracture." She turns to me and picks up my right hand in hers and starts poking and prodding. I'm practically screaming in pain during this, and she says "Let's get you something strong for the pain." I love this doctor instantly.

Dr. R explained a bunch of technical information about my wrist. She says she sees that a particularly important bone that moves my wrist around is fractured rather severely, and it looks dead. I'll have to see the top specialist for this she says. Then, she gives me hefty doses of vicodin and flexeril to ease my pain and tells me to go down to X-ray and ask for a copy of today's pictures.

Let me just officially say, on the record, that I'm light as a feather coming out of that office into my husband's arms. Dr. R comes out with me to say "You were coming in to battle me, weren't you?" I concur. My husband tells her we've never ever had an X-ray done because no one will listen to the symptoms. Dr. R said that just by reading what I wrote on my information sheet as to what the visit was about - that X-ray was the first thing that had to be done to rule anything out.

I couldn't believe how amazingly lucky I got that day. A new doctor with an agenda. And, furthermore, for the year that I had her, she never disappointed me. I never minded waiting for her if she took longer with patients or was brisk but calculating. She knew what she was doing and, unlike MANY doctors, she really wanted to help and WAS helping.

Vindication never felt so good. For the last (almost) decade, I had been crushed miserably by pain, by failure, by losing my livelihood ... I finally felt grateful for once. I felt grateful for that prissy British doctor who took her job seriously, I felt grateful that I hadn't given up, I felt grateful for all the torture and B.S. I went through to get this far. Never again would someone tell me I had tendonitis, tennis elbow, or worse - carpal tunnel that doesn't register a reading in nerve testing so there'd be nothing they could do about it.

Finally, I had an answer.