Saddle Up

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

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

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

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

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

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

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

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.

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.

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.

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.

The lake's significance ...

Summer of 2009 was going great. My husband and I had been married for 6 years, were living our dream in a small mountainside wine village in Germany, and had the most beautiful house and smartest dog. Things were great.

Or were they?

I had been going back to school for a year that June. I was taking a U.S. History and an ethics class. It was going superbly as I was on the Dean's List, and doing extremely well with an almost perfect GPA. So, of course my husband wanted to distract me on a beautiful summer day by stating "We're going to the lake."

There's this little man-made lake in the mountains behind our house that we had discovered the summer before, and were frequenting weekly the summer of 2009. It may have taken 40 minutes to get there on one lane roads, but it was well worth the beautiful trip through the mountain country. We even had "dream" houses picked out along the way. Mine was a run down, mid-eighteenth century farm house that was overgrown near the famous Siegfried fountain (Wagner's Der Ring Das Nibelungen). My husband's was a modern marvel seated precariously on the side of a mountain that overlooked a valley that was regularly full of cows with tinkling bells.

I distinctly remember this particular trip to the lake in June because we took our dog, and I took my school books to study. It had been a good beginning to summer. Not too hot, beautiful blue skies almost every day, and little humidity. We got there and spread our blanket out on a little hill in front of the only dock on the lake. My husband threw the dog's ball for him, and I lay down to read my texts.

We'd been there maybe an hour when it clouded over where we were laying. I kept my sunglasses on though, and kept reading and highlighting, commenting now and then about Andrew Carnegie and the Triangle Shirtwaist fire. My husband had come to lay next to me and was munching out of a tub of grilled chicken strips and drinking a Capri-Sonne (Capri-Sun to you American folk).

I can remember what exactly prompted it, but I was hit by repeated blows of crushing pain in my right hand and arm. This was not unfamiliar; I'd been experiencing these types of pains for years, since approximately 2001 when I had a rather terrifying football accident. And yes, I know, girls don't play football for a reason. Don't remind me...

My husband, the dear that he is, gives me his typical helpless, concerned look and tries to console me. "Are you okay?" "Is there anything I can do?" Knowing both the answers every time he asks ... he still asks. He's scared. He's been scared since he met me and we started seriously dating because he was there for some of the worst experiences I've had.

We start to talk about needing to go back to the doctor, debating whether or not it's a good idea. We've been married 6 years and have seen twice as many doctors as years we've been married by now. He tells me I should go. I insist that if I go, we will never do another nerve test because it's not my nerves. He agrees. I say, in all these years, they have never once taken an X-ray. I say I am going to demand an X-Ray. He agrees.

We left the lake that day satisfied with the conclusion that we refused to put up with shoddy medical treatment or advice any longer. It was time we discovered that it wasn't all in my head.