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.

Stubborn Me

For years I've lived with constant pain my hand and arm. I actually have had it so long, that not feeling the pain would not be normal. It'd be downright weird. But the thing is that even though I've lived this way so long, I refuse to mentally acknowledge my condition. Like, that gear in my brain that automatically thinks like a girl with Kienbock's, doesn't always fall into place.

After my second surgery, we were at a friend's house. Her husband was on a hardship tour in Guantanamo, and she had a newborn baby at home. We were being good people and good friends by visiting her regularly, going out with her, and helping her with the baby. So, we had literally gone there two days after my surgery - I was still on percocet at the time, and very strong anti-nausea medications (this is before I had the worst 2 weeks of my life). I was so dumb about my arm, I picked up the baby. At the time, he was probably a good 12-15 pounds. I later found out that doing that ruptured a bunch of blood vessels and I had the most ugly bruises on the planet for several months.You just don't think about it. It's so second nature to reach for something and pick it up. But, I have a tendency to miss or drop. So I was the dummy that picked up the baby.

Today I still have a tendency to walk into a store, and pick up a bunch of things, go wait in line at the register with my armload, and then carry heavy bags around. I think that I can make, just this once. I think every other time that I'll get a cart - but I don't want to be the girl who is pushing a huge cart around Safeway with just a gallon of milk and a few veggies. I am just that stubborn.

Learning to give up control in situations where you believe you can do something is harder than you think it is. Thinking about myself as a person with a disability when I am able in many other ways is just a flat out chore. I can admit I can't do things, but I still want to do them. And so I insist on doing so. In reality, I shouldn't do about half of what I do do. Stubborn is just part of my personality. When I really believe something, I won't give it up. I refuse to budge on my ethics, and therefore it's all too easy to refuse to budge on what I believe I can do.

I'm learning to ask for more help. I'm learning to get over my fear of judgment and rejection. I have been making important strides in letting go of being stubborn, but it's always a challenge I have to deal with daily.

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.

Remembering a Walk at Christmas

So if you've been reading my blog or catching up on all the old stories, you recall that we lived in this large home in Germany at the time because my husband was stationed in Mannheim for the greatest 3 years of our lives. And, his parents were visiting us very shortly after my first surgery for Kienbock's. You may also recall that I took very few drugs to help with the pain - largely in part because I hate medicine, but also largely in part because I didn't need it. It did nothing to stop the pain.

I do recall a particular evening just before Christmas. We had spent part of the afternoon walking through our village, and up the mountainside to where the vineyards were so J&S could see the spectacular view we had of the Rhein-Neckar valley. Seriously, spectacular. We could see miles out on good days, and every day we could see Mannheim which was 12 kilometers away. It was a little cloudy, and it had been snowing. We took the dog with us, all bundled up in his sweater. But, he finally started shivering after an hour or so, so we trekked back down and decided to go to the church next door to our home.

To be honest, we had never been inside the church. Mostly, because there was always something going on. Concerts, weddings, funerals, services, it was like a convention center for our village. Anyway, we went down into the church courtyard, and I recall looking at our home from a very different angle. I'd always seen it from our perspective, but from next door I recall thinking "No wonder why all those people keep coming and looking in our windows!"

The church is a catholic church, and inside it was largely lit by candles. There is a black Madonna altar which is said to perform miracles. In fact, the walls of the church were encased with stories and pictures and prayers from locals who had received or were asking for miracles to be performed by the black Madonna. I'm never one to squelch people's stories about religious artifacts - partially because as a human being with a belief in greater things, I too would love to believe that the reason someone didn't die in a car crash was because Christ's mother was watching out for them.

My father-in-law and husband took turns waiting with the dog outside the church so that J&S could have the time to look around as well. We weren't there very long because of our freezing puppy, so we went back to the house where we had hot chocolate and cider. I remember we played a few games, one of which was Blokkus. My father-in-law got the gist of the game after the first round, and decided he'd block everyone early on in the game. It was difficult maneuvering around him, but we managed. And, it turns out he lost very badly. To this day we give him crap about playing Blokkus.

I remember though, that day, my husband convinced me to take some medicine. I can't remember if it was Percocet or hydrocodone ... but I was high as a kite for a few hours on it. It sure didn't take care of my pain, but it improved my mood. It improved my mood so much in fact that we have photographic evidence. At that time in my life, I wasn't too keen on photos. Normally, I like having my picture taken by my husband - not so much by other people, but he manages to capture good moments that I like to remember.

This being one of the few times I ever willingly took medicine outside a hospital to help with the pain, I became a bigger believer in strength of mind. I have other injuries where occasionally medicine helps. For example with bursitis pain, taking some ibuprofen helps alleviate symptoms and inability to keep still. But nothing, I repeat, nothing, gets rid of Kienbock's pain. It's there and you have to live with it every second. I've uncovered ways to ignore it or mask it, but for years I've lived with the pain as if it were part of me and who I am.

Essentially, I own Kienbock's disease. I let it help define me. If I didn't, I'd live a miserable existence. It's like people who are in wheelchairs accepting help. If you don't accept help, how do you expect to get through life happy, and well? You won't. You might not be able to reach for something, but that makes you no less dignified and no less human. We all have hurdles in life. Owning them and dealing with them is the only way to ever get around them. Refusing to will make you unpleasant, and worthless. Simple things like taking walks and playing games helped me overcome the fear and incapacitation of the pain. Being with a husband who has supported me in the best way he knows how has also helped. Relinquishing control will gain you control - if that makes sense to you in some messed up way. Life is all about obstacles. You can either accept them and your reactions to them, or you can drown in them. I choose to accept them.

No medicine = good medicine?

You might be shocked (or horrified) to find that while I was in the hospital, I had almost no pain meds. Germans take a very holistic and homeopathic approach to treatment. They say that the Germans are excellent diagnosticians, but the Americans are better at treatment. I don't know if this is really true, but I do know that Germans still ascribe to remedy situations with as little drug as possible. People are still sent to spas to treat a variety of conditions and diseases in example - in fact, your medical insurance would cover this. And, many spas don't allow you in without a prescription, no lie.

So, when I was given practically nothing at the hospital, I wasn't surprised. Every now and then a nurse would come it, ask about my pain, then check if she could give me morphine (blood pressure, heart rate, etc.). In the entire time I was in the hospital, I had 2 small doses of morphine, an ibuprofen in the morning and evening that did absolutely nothing, and vitamins. When I was feeling nauseous, a nurse would come in and put on a saline drip. I don't know why this helped, but it did. I was nauseous a lot in the hospital.

Morphine is serious. It, however, also did nothing to treat my pain. I'm notorious for being difficult to treat pain-wise, so this didn't surprise me. I'd had morphine before following a very serious neck injury. I hate it. It's the worst feeling, ice entering your veins and numbing your senses ... but not the pain! Even though I was given a very small amount of medicine, it didn't work. This equals, to me, no medicine. I still had all the pain.

The second day in the hospital was better. My husband came around lunch time again and showered and changed me. I was given high praise for my German skills by a nurse to whom I had done the self-deprecation routine of "Ich spreche nur ein bisschen Deutsch," which means I only speak a bit of German. She didn't think so, but I told her it's hard to communicate in a hospital as opposed to communicating with a neighbor, a restaurant or grocery store. Those are words I know. Hospital words were not words they teach you in German class.

One of the words that I learned while I was in the hospital I sort of already knew, but I suppose it was more colloquialism. Krankenschwester is the term for a nurse. It literally translates to sick sister. Well, they simply refer to nurses in a general term - schwester. This is just like saying sister. It's kind of funny to me, but in a way is comforting. I mean, my sister never took care of me when I was sick. But, back in past centuries, the sisters of the church would be charged with the care of hospital and hospice patients. So it's not only endearing, it's historically significant. But, it's still funny they say sister. I keep thinking my sister, but nope!

Saturday was a bright day. We had a big row of windows in our room, and it was bright all the way up until sunset. Even though our room faced a side street as opposed to the main city square, we still got an awful lot of light. Germans are also excellent architecturally. They are pros at putting in windows that get lots of light. They definitely have an edge over American construction and architecture. Anyway, it was so bright that we didn't need the lights on. I read my school books most of the morning, and then my husband came again after lunch. He showered and changed me again, and we played a lot of Skip-Bo. I actually felt so good; I got out of bed and played at the table in our room. Then we went and walked around the floor that I was on when the doctors came to do rounds on my roommate. The entire hallway towards the middle of the building was a huge row of windows that faced down into the main lobby, and up to the greenhouse ceiling. From my floor, we could see this piece of artwork hanging from the ceiling. It was glass bits hanging on stringy metal rods. It looked like it belonged at the Tacoma Museum of Glass of something. After we walked around the whole hallway, we sat at some comfy chairs and a table just outside my room and played more Skip-Bo.

My husband left early to go order dinner from our favorite restaurant, this little Indian place in the pedestrian zone. They had delicious food and he wanted it bad. Plus, it takes them a long time to make the food because they cook nothing until you order. So, he was going to be down there for a while.

While he was gone and getting is Naan on, I got two visits. First, I got a visit from someone who is a patient liaison for our military insurance. She came down to make sure I was being communicated with basically. It was kind of a pointless trip, but I didn't exactly have anyone come visit me (even though we did have friends in Germany) or call me. So, I didn't mind much. Besides, she had a funny half-British accent. You could tell that she either married an American soldier, or lived most of her career in England.

After the insurance lady left, a doctor came in with a nurse and told me Dr. P. couldn't make it today, so he was filling in. He's the other hand specialist in the orthopedics clinic, and was quite a bit younger than Dr. P. He said they were going to take a look at my arm.

I'm weirdly excited. I was the freak who liked the day in chemistry class when our teacher showed us an autopsy - in fact, for 2 years I wanted to be a pathologist or a coroner. I also was the freak who liked watching those medical shows on body part reattachment. They used to have this exhibit at the Seattle Science Center that my dad took us to, and I would sit there and watch them reattach fingers, hands, toes, ears...

So the nurse cuts the bandages in half and peels them outward. I have a huge cut from my wrist to halfway up my arm. It's about 6 or 7 inches long. There are no stitches, and you can see these huge black scabs that have crystallized over the large gaps between the skin. I ask what they secured my wound close with. It was glue, he said. Cool. Off to the side of the bottom of my scar, there's a tube sticking out. What's that? It's to drain the wound he says. In fact, he says because there's been so little bleeding that they're going to take it out. Cool.

I'm not normally bothered by things like needles and shots. I'm not very squeamish. I can eat dinner though an episode of Bones or Hoarders and not even bat an eyelash. So, when the nurse tells me to look away, I kind of wrinkle my eyebrows. What? And miss this? Heck no! The doctor puts on gloves, and just yanks the little tube out. I didn't really feel anything except a weird sensation. I suppose it would be akin to removing a ring from your ringer, but inside your skin. It didn't hurt and just felt plain bizarre.

Some blood welled up and the nurse swabbed it away. The doctor then poked and prodded my arm and fingers. He tried to get me to grasp his hand. He said that the fact that I still couldn't feel anything or move my hand much was unusual. He asked if I was doing my exercises. I told him I was. I tried to remember to do them every hour, but I got tired a lot and napped before my husband showed up. So, I suppose I did it about 8 times the day before, and a few times today already. He suggests trying to do it every half hour. Okay, I guess. I really am not going to remember that recommendation much better, but whatever. I'll try.

I think because the doctor called him, the anesthesiologist shows up. He checks my nerves and sensory by poking and prodding too. He has me explain to him what I feel, if anything. I honestly can't feel much and can tell my nerves are deadened to a strange point. He says this is uncommon. He explains that in order to do the join leveling procedure, the doctor had to cut me open, pick up all my nerves, muscles and tendons, and move them to the side. It is possible they have not settled from this dramatic experience. He thinks I'll regain most of my sensory in the next month.

The doctors leave, and the nurse re-bandages me up. She also leaves to go get a new ice pack. I hated that thing to begin with, but I sort of am hooked now. I actually asked her for a new one ... oy!

My husband came back when I had almost finished dinner. It was a fish dish, and because he's allergic to fish, he couldn't have any. But, I ate about half my food this meal. I remember also that there was a dessert cup. I think it was quark with forest berries. There were Heidel berries and blue berries, and himmel berries ... it was delicious. I usually am very very picky about my fruit, and I'm lactose intolerant, but for some reason I ate it all. I felt bad when my husband showed up because he really should have tried it because he would have loved it. But, he brought his Indian food. He had chicken nurani and garlic Naan. It was so good. I ate a bite. I didn't feel bad about the smell either, because my roommate was sort of oddly obnoxious. She was always having visitors and being loud enough to keep me from napping or sleeping, her doctors kept kicking us out of the room, she had been leaving the window wide open all day and all night because of the heater in the room, and she never spoke to me except that one time she called the nurse when I was puking. So, I hope the smell either made her tummy hurt, or annoyed her.

My second day in the hospital wasn't too bad. It would have been nice to have had some actual medicine. The entire day was spent in excruciating pain but no one would have known it. I worried though. The pain was bad. I didn't know how I would make it through the next 1-2 years with this stupid bar and screws in my arm. I could feel them even though the doctor said I wouldn't. I could feel the wrongness in my bones. I could feel the sawed bone's tenderness. The pain was an enormous burden.

That night was my worst night of sleep. My roommate had guests until almost 11, and I spent the entire night rolling back and forth on my bed in pain, slamming the nurse's button. They'd come in, check my blood pressure and heart rate, give me a drink, and tell me to try to sleep. The pain that night was the worst I'd endure post-surgery. I think my body finally realized what had happened.

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.