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.

Heading Back

I am alive, yes. I am also returning to work part-time. Does this make me happy? I don't know. Am I excited? Definitely not. The things I worry most about now are the facts that my bone isn't growing at all, and now I have to purchase some medical equipment called a bone stimulator that the FDA approves only for one time use, meaning this could be a risky investment if the bone decides not to grow at all, and also because I'm still in a lot of pain every moment of every day.

It has taken weeks to get the authorization forms from my doctor, and today I was finally able to get a copy of them and take them to my workplace. It has been almost 5 months since I've stepped foot in there and seen almost anyone from there. It made me extremely lightheaded and nervous. And now, I have to wait for word back from my department manager as to what schedule I will be working with my limited hours and days.

In the meantime, I'm silently freaking out that all this surgery has turned my brains to mush. I deal with this on a daily basis. All the medicine, all the pain, all the depression and loneliness, not just over the last few months but over the last few years, has left me incoherent, forgetful, and inconsistent. All of these things I am NOT KNOWN FOR. It's highly aggravating to say the least.

Talking about brain mush here, let me just say that aside from insensitivity or overwhelming me to the point of wanting to scream at you to leave me the [expletive of choice] alone... people that are impatient with my slow brain are seriously driving me bonkers. Yes, I mix things up. Yes, I forget things. Yes, I say things backwards. Yes, I cannot find the right verbiage with which to respond or just speak. It leaves me devastated that I know how intelligent I am, and people are treating me like I'm a foreigner who can't speak English, or like I'm not a bright person and that I have to be spoken to as if a child.

So, going back into an environment where I'm a big team player and a mentor makes me really dejected. People will be people and they'll continue to bug the ever loving piss out of me, but I'll have more than those small potatoes to deal w with. What if I can't remember to do my job? What if I can't cut it, and I just end up fired? It's all scary. I have to listen to my husband on one end telling me that (okay, not exactly his choice of words, I'm paraphrasing) I'm crazy and to stop being crazy. He doesn't think it's a big deal. Well. I just happen to be the primary bread winner during the majority of the calendar year, so yeas I must worry! I must worry that he's at school 4-6 hours a day, and then has another 4-6 hours of homework, and has to work part time, and has a band he practices with twice a week, and that's not bringing home the bacon needed to pay my medical bills, rent,  groceries, utilities, and our car. Granted, this is the last year we'll have to do this and believe me when I say I'm not letting him decide to go back to school in the middle of his life again while I'm stuck at the helm of this cruise ship dubbed doom ship. On the other hand, I have the people who are like "you're excited to go back to work aren't you?" or "it's so nice to have you back," which are BOTH designed to spear me through the heart and make me feel guilty for having a serious medical condition that put them out.

I love my job, don't get me wrong. I really do. I'm good at it, I enjoy it, and I feel like I make a difference ... most days. But I feel no one understands. Maybe the lady I know on my team who has cancer and was out for a few months for treatment might be able to somewhat understand, though she telecommutes so she's not around the people all the time.

 So I guess this is the point where I say I'm a downer all the time, and I worry all the time. That's my life. I can't change who I am. These things affect me 24/7. Kienbock's is a disease; it's not like a virus where it will just go away. Most days are tough. Most days I have to grit my teeth and pray that I make it through. It's not an easy life. Being on disability has not been easy either. It's been a trial in itself.

I don't know if you can comprehend my ramblings here, but if I don't get them out of my head, they poison my thoughts and my heart. It's better to unload them raw onto an invisible realm where people can sit around and judge how ridiculous I'm being. Right?

I'm Allergic to Percocet

Some people might call me strong. In reality, I'm a big fat cry baby - you just never see it. Case in point, this last Tuesday night I tripped in my dining room. I was watering my herbs sitting in the windows, and stepped on something, then tripped over it. What happened next? I fell back against the wall thinking I could brace myself and ended up accidentally slamming my arm (which at that point was not in its cast because I was getting ready for bed) on the corner on a wall, in the spot where I just had surgery.

I almost fell over the dining table getting off the wall, and my husband came running over to see what was wrong. In that two second time period from tripping to slamming, I had burst into tears and was screaming from the pain. I'm hysterical when I'm caught off guard like this, and I tend to babble and mumble inaudible things because I can't hear anything over the pain. So, he's trying to get me to tell him what happened, and I end up screaming at him that I tripped and slammed my arm on the wall.

Almost instantly, my arm began to balloon in an area the size of a pumice stone - I mean, it wasn't my whole arm. It was just the area that got slammed that was irritated. I didn't break skin, and I still have no external bruising (for some strange reason) but it is incredibly painful to the point where I lose feeling in my arm. I'm not supposed to ice my arm per doctor's orders, but we iced it for 30 minutes, and I took an OxyContin. Then, I proceeded to NOT FALL ASLEEP. (Big sigh)

The next morning, my husband left for work and left me with our German daughter, who missed most of the debacle the night before. She knew it happened, but I was ushered straight into the bedroom, so she had no idea how bad it was. When I ended up getting out of bed at around 10am, she asked me if I was okay. I thought I was so I took my morning medicines like normal, had a breakfast of leftovers from the night before, and then took a Hydrocodeine.

In less than two hours later, I was flying high as a kite, feeling sick to the depths of my stomach. I HATE that feeling. I tried calling my doctor to see if I needed to get it looked at early, to find out he's on vacation until Monday, and my next appointment with him is on Monday anyway. I remember my husband called to check in on me, and I was crying on the phone that I was high and that I didn't like it and that I needed to throw up - or something. I was running back and forth to the bathroom thinking my meager breakfast was coming up every time, and getting disappointed that my stomach would just end up gurgling for a minute straight. So, I ate 4 Tums and within 10 minutes was puking my guts out.

That's when I gave up and went to bed. I spent the next 4.5 hours trying to sleep, failing, and puking. I couldn't even keep water down. I just lay there, miserable, getting incredibly sore in my neck and hips, unable to move.

At 5 I had to give a piano lesson, and so I forced myself to get up. My German daughter had spent the afternoon out and about, and was back from her adventures, playing with the cat in the office. I jerkily got the house ready for my student, feeling absolutely disgusting. I couldn't just call off the lesson. I forced myself to remain upright and in control of my body. I made it through about 15 minutes of the lesson before I started to feel hot sweats and the tar pit stomach. By 30 minutes, I was barely holding it together.  At 45 minutes of rocking back and forth, trying not to puke or pass out from the sickness and heat, I went and got my German daughter and had her run flash cards with the student, saying that I was going to the bathroom.

I went into my bedroom and bathroom, and because of the air conditioning it was already really cool in there. Instantly I started to feel less like passing out and a little more like putting my head in the toilet. I ran my hands in ice cold water and splashed my face. I gripped the side of the sink and willed myself to make it through the last 10 minutes of the lesson. I don't know how I did it, but I made it through, and immediately after they left, I was in my bathroom with my head in the toilet.

When my husband came home, he blamed himself for giving me the medicine. Now see, I'm highly allergic to Percocet - and OxyContin is a type of Percocet. It's an opiate narcotic that causes me to uncontrollably vomit for hours or even days. It's dangerous to my body. My surgery in 2011 proved my inability to tolerate the drug. I spent a week unable to keep down anything liquid or solid and felt extremely badly for my husband who slept on the hardwood floor in front of the couch, trying to keep up with the many clothing changes, helping me off the bathroom floor, and trying to get food and water into me. I was severely dehydrated - it was the most horrible thing I've ever experienced in my life. So, one little pill can take me out. For DAYS on end.

Well, my doctor is aware of my intolerance to the drug, so he magically gave me the anti-nausea ear patch to wear while I was taking medicine. They last for like 4 days, and he gave me a prescription for 3 of them to get me through the first weeks post-surgery this time around. It helped. I was able to tolerate the drugs in my system, and function. It was a miracle.

Well, needless to say my husband felt guilty because he gave me one of my prescription OxyContin pills thinking that the jarring whack on the wall and the resulting pain and swelling made it necessary. I told him I took a hydro about 2 hours before the adverse reaction began that morning. Normally, I can tolerate a hydro without any nausea medicine IF I take it before bed and I sleep through it. But, that's not what happened. By the time I'd taken the hydro, the oxy had been taken over 12 hours before, so it was safe to take the hydro ... or so I had assumed.

So there I was, miserable on the bed, pillows piled around me, Salonpas patches covering the side I was laying on, unable to function more than to stare at my Kindle screen while a show played. He checked on me, then went to tell our German daughter he brought home a pizza for their dinner (He didn't want to cook, I couldn't, and it was fast and simple.) I proceeded to spend the next 30 minutes with my head in the toilet after I had attempted to eat 3 crackers and drink a glass of water. Low and behold, I walk out of the bathroom and I'm mortified that he's standing right there listening to the whole thing. I made him go eat his pizza in the other room and leave me alone.

It was a nightmare. I wasn't able to feel somewhat settled in my stomach until 10pm, when I asked for a bowl of soup. This morning, after spending 21 hours in bed, I'm pleased to say I haven't had my head in the toilet since 7 last night. We don't know if my arm is okay, and we will have to wait until Monday to find anything out for certain. But, at least I got that damn OxyContin out of my system.

Accidents happen. More so once you're in a fragile state such as mine. But, good rule of thumb - ALWAYS REMEMBER TO TAKE MEDICINE WHEN WEARING THE PATCH. No patch = no medicine. Period.

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!

Life Ain't No Stack of Pancakes

You might be wondering what I am really like when you read my blog. Am I always so downhearted and disillusioned? Am I a whiner? Am I a party pooper?

No. To all of those.

I'm somewhat of the mindset that people confuse conversations and statements on social media, blogs, interviews, etc, with reality. These are snapshots in time of what my life is like, this is not my life. Well, that might seem contradictory to everything I've said in the past - but think about it deeply for a moment. You are not your diabetes disease, you are not your sprained ankle, and you are not your asthma. But, living with a condition, disease, or injury can make the bad moments stand out from the good ones.

I'm somewhat of a morning person. By this I mean, if I've had a good or decent night's sleep, I'm peppy at work and drive my coworkers crazy with my happy face and jokes. I'm a fluent sarcasm expert. When someone asks me to do something, I tell them very sweetly "Not today. Maybe Tuesday." Tuesday is my fall back day ... mostly because Tuesdays are usually my days from hell at work. You'd think everyone hates Mondays ... but not me. I hate Tuesdays.

I'm a very loving person, and I just want to be loved in return. This is perhaps my biggest sore spot. As a human being who craves true friendship, unconditional familial relationships and respect, I try to make everyone my friend. I never succeed in this, but I don't stop trying. Someone out there somewhere will connect with me I hope, and I never stop hoping. Hope is all we have on this tiny planet because nothing is certain.

Life ain't no stack of pancakes. Aside from the holy nightmare of being a lac-tard (lactose intolerant), believe me. You can't win every single day; it just doesn't happen like that. Pancakes don't just appear in front of you smothered in strawberries and cream with a hot mess of syrup - as much as we'd all love that to be true. You can't live your life with rose colored glasses on. That's no way to live. Take off the glasses. Reality is that you only have control over your mind and body. Everything else is chaos.

I feel that I am an inspiring person. At work, I'm always told that I'm helpful, knowledgeable, and that others wish they could be just like me. Hey, I wish they could too. It's a definite confidence boost to know that others respect you and look up to you. When I give piano lessons, I try to instill the magic of music in each of my students in a unique way that touches their little souls. I get great comments from parents who are grateful, and see improvements as amazing feats of nature. Well, THEY ARE!

I'm also a very kind person. I mean well. I have a tendency to hold open doors for old men. I don't know why they're always old men, but it feels like 90% of the time, my door holding is for old men. Probably because I tend to be an old people magnet and I go inside the bank like all the little old people. I don't know. I'm laughing now, because it's true. I have an old people radar. I love them, they love me. You can also catch me with my husband making donations to important charities when we can afford it. I'm mediocre at charity, but I try to be a charitable person. I wish I could be more charitable. This last Christmas, we gave to the local Veteran's Association. Well, I did. My husband was down the street but I took my last $10 from my paycheck that week, and stuffed it in the Veteran's Affairs can out in front of a local bookstore. I do the angel tree every year - sometimes for two needy children. My husband and I have done the angel tree 4 out of the last 5 years - when we could afford to spoil a child in a foster home rotten. We also invest in Girl Scout cookies, I've ran my department of over 100 people's campaign for United Way where we raised over $2000 worth of items for a raffle that supported local businesses, low income families, women's programs, and more. I listen to people, I donate old clothes and household items, I reach out to people, I love my animals, and I try to smile. I think that goes a lot in the way of kindness in this era.

I vote responsibly. I'm not sure you were expecting that, but I'm not a political activist of any sort. I have my convictions yes, but I do take voting seriously.

I also cry when I watch documentaries, movies or TV shows that have very strong themes that I can connect with. Cheesy or not, it's hard to touch my heart sometimes with all the desensitization we get with the media and society glorifying and over exposing violence, etc. But when my friends/acquaintances tell me the bad things that happen to them, or I watch something truly heartbreaking, I'm a big fat softie. I just hide it super well.

I love love LOVE to play games. Board games, card games, dice games ... anything that's not creepy or too out there like DND or Magic. No, it's more like I want to sit down and play Phase 10, Power Grid, Ticket to Ride, Boggle, etc. I hate just playing alone with my husband too. It gets old quick. But, we can rarely get anyone interested in coming over for a games night. Though, we recently had one with a friend we've known since college, and to whom I give her daughters' piano lessons - and I think we had a good time playing Clue, Skip-Bo, and Settlers of Catan.

So, even though life ain't no stack of pancakes, it's not all crappy either. I live with a disease. Sometimes my bad days are really bad. People need to hear the bad stuff just as much or as often as the good stuff.  I think that generally, people need to hear the bad stuff more than the good. The people in my life tend to sweep everything under the rug and think it's okay to do so. People did that with my mom's cancer and a lot of them missed out on the last two years of her life. If we don't deal with the obstacles and issues in our lives, we'll never learn anything and we'll never have those awesome days. Besides, do you really want to come on my blog to find 1 sentence saying "I opened a door today."? That would be super boring. I think it's more realistic if I said "I struggled for 30 seconds, but finally was able to turn a doorknob today and open a door. It hurt really bad, so I'm going to go sit down and relax until I feel I have some strength again. It's frustrating."

I'm a person. I'm not a sentence or paragraph. I cannot be "summed up." I live a life that is complex. There's more than meets the eye.

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?

Back At Work

One would think that after having to go on disability for 2 months and returning to work that maybe I am well enough to actually do the work. I mean, I've had my cast off since the middle of September, I've been in occupational therapy now for a month and a half and have barely used any medicine (because honestly, what medicine works? none of it) that it wouldn't be so bad to return to using a computer 9 hours a day.

Well. Let me educate you on what is really happening.

I told my case worker (who was practically TELLING me to work part-time for a few months) that I'm going back to my full schedule. Normally I work 4 9 hour days, and 1 4 hour day on Thursdays. This is to allow me the time to get to appointments that are always at inconvenient hours, and to get some bloody housework done. Amen right? I mean, for the most part, I love my company and I really enjoy my job so the fact that they offer compressed work weeks is awesome. It would be even more awesome if they would give in and let people work 4 10 hour days but they claim that's too much of a liability .... believe me, I've pestered them.

So here I am, in the middle of week two back at my job. I have lost some friends (who weren't really friends in the first place, they just used me for their own benefit) and my current team has changed a lot, but I have some really good co-workers who are helpful when I need them to be because let's face it: 2 months off of a job that involves routine and knowledge of tiny details for all sorts of one-off situations can leave one feeling overwhelmed with trying to remember everything. My brain hurts. On top of that, there's the stress to perform. I'm permanently disabled by this disease and it's degenerative. Wake up call to those stress givers! In addition to this, I have to deal with the pain of using my hand constantly for 9 hours straight when the pain is unmanageable. I mean, on Monday I did take one of my prescription tramadol (originally for my back) to help alleviate the sharp and festering pains that would not subside and were getting worse, but it can only do so much. So, at the end of the work day my hand and arm are completely shot and exhausted and I have little energy that I can devote to myself, my house, my pets, and most importantly my husband. Hell, I can't even feed myself.

On Sunday evening my in-laws S & J came over to play a game with us. We ate dinner while we played (because well, it was 6 and I had to be up at 3:30 in the morning) and I had to stop game play a few times so I could grunt and yell and do this thing where I halfway lay my head on the table and squeeze my eyes in order to bear through. This is after I spent most all of Friday evening, all of Saturday and most of that Sunday relaxing so as not to aggravate or overuse my arm. And guess what? To my disappointment, I STILL can do NOTHING AT ALL and it's just as bad as if I were sitting in my office keying my work.

So, to everyone who thinks that having Kienbock's is nothing special, you're wrong. It's extraordinary. My boss may not care that I'm different than everyone else, but my friends and family had damn well better understand that this disease is like a sucking chest wound in that you may start with something seemingly curable or manageable, but once you get into that hospital operating room, you realize it's like a tiny black hole in your personal universe, sucking everything in creating a precarious situation that begins collapsing in on itself.

If it were possible for anyone to understand chronic back pain, (I suffer from that as well on a moderate scale but that is beside the point) think of my disease as chronic back pain. If I were a weaker person, I could easily become addicted to prescription medication, I could easily succumb to wasting my life, I could easily turn into an alcoholic, etc. A good number of people with chronic back pain struggle with these kinds of issues because there is no way to manage it. I had a relative die from an addiction brought on by chronic back pain after he fell off of a roof working in his roofing business. I've seen it first hand with co-workers of my father who have those "panic" morphine buttons that they can just inject themselves any time they need while at work. I know their pain. I know their struggles to get through the day without needing to scream your lungs out and insist on chopping off body parts in order to take the pain away. If I were a stronger person than I am, I wouldn't fall into the trap of depression, but I have to be thankful for how strong I am as it is. I couldn't ever let myself be overcome by this disease in ways that broken people might.

So in reality, my return to work is more of a chore and a trial than a need for cash. I mean, I do need cash - I have bills too. But this is extremely difficult. I know there are other jobs out there where it would be more difficult, but this is who I am and what I do. I deserve as much attention for my difficulties where I am at in life.You may think that I should be grateful, and don't think that I am not. But picture yourself doing a job with one arm. What job is it? I don't have nearly as many options as you might think. I'm really stuck with what I've got and I have to pay my bills, I have to have medical insurance and I have to survive like everyone else. There are just days (like every day) where I want to give up and tell my husband that I'm done and there's nothing I can do because the pain is too much, the difficulty in using my hand is too much.

I'll Never Be Who I Was

Some revelations are so profound that I often have to push them out of my mind. Recently, a family member who pays little attention to me asked me the question everyone asks when they find out I am a musician. "Can you still play?" Sad smiles don't even begin to cover the immense shame and pain that I feel when people ask me this.

I was talking to a gentleman at occupational therapy yesterday who asked me some very pointed questions strangers shouldn't ask someone. But, we're all at hand therapy and a few of us can be kindred spirits. Sure, why not? I answered his questions becuase he clearly had no idea who I was and what I deal with.

I didn't catch his name but we can call him Tom. Tom is an arborist who has severe pesticide and chemical damage to his hands and feet. Tom says "You injured yourself pretty bad there, did you?"

"Um, no it's a bone disease." I do that to cut of curiosity seekers - you all know that the majority of people don't care or show a passing interest.

"It's a what?"

"It's called Kienbock's disease."

"WHAT?" Clearly Tom is not a disinterested person. He thought I was just there after doing something stupid like dropping a concrete block on my hand or something. I mean, I can sympathize because in his line of work you have to be a big risk taker if you deal with pesticides and chemicals constnatly so maybe he thought that he had  a bird of his feathers or something.

So, I sat there and explained to Tom. His face looked crestfallen while I explained what my disease is in short, and how that affects me. He asked me some poignant questions and what I did for work. When I told him I teach music in the evenings he looked like he was going to cry or hold my hand - but his hand and my hand were both in electrode wraps.

I don't normally connect with people. I have a very dangerous past that disallows me the comfort of connecting with people as I am very damaged emotionally. For some reason, this man didn't bother me. Typically it bothers me to talk about myself to just about anyone. I was never able to talk to my mother when she was alive, and forget talking to my dad or my sister and brother. My best friend and I have an understood silenece about ourselves in which we don't need to talk about things - our presnece is just comfort. But, this man was different. I think it was a good thing for me. For once, it was a good thing to connect iwth a person.

It really hurts me that people don't really want to know about you when they ask. It hurts me just as bad when people who you do want to know you, don't want to know you. this was fdifferent somehow.

I'll never be who I was. I'll never play the piano the way I used to when I was 18 and in my prime and a student of one of the best pianists I've ever had the plasure of working with. I'll never play those Chopin Nocturnes my husband loves, and I 'll never perform again publicly or play for church. From our short 10 minute onversation, this man knew that and felt my struggles and pain. He asked me what I'm going to do. I said "What can I do? This is my life. I have to live with it and deal with it." I'll never be that person again. I was never meant to be that person.

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.

The Adventures and Misadventures of Vacation 2014

I, Kienbock's Girl, have had several adventures and misadventures in the last few months.

My husband and I took my hard earned vacation time to go to Europe and spend time with our exchange daughter and her family. We planned since our daughter left us to visit her this year. Back in February, we bought tickets, and started planning a vacation that ended up taking the 4 months before to plan it out entirely ... and then of course we didn't stay on the schedule we created, but we never do as we add and delete as we go with the flow. So, we spent 2 lovely weeks with our daughter, and a week with her family. Overall, it was a very good vacation but I learned some things.

1. Always travel with the husband - do not fly alone.
2. Only fly with Iceland Air if you're going to Iceland. The seats are too tiny for a normal sized person let alone a 6'1" man with gigantic shoulders, they make you follow ridiculous overhead luggage sizes, and they don't feed you any food (you must pay) and give you drinks 2 times in an 8 hour flight.
3. When flying, attempt to find affordable seats in business or 1st class - or pay for a last minute upgrade if available.
4. When flying, even if the doctor tells you not to take it, take lots of ibuprofin. 
5. I sincerely dislike Belgium. Beautiful buildings, great history, but dirty/stinky cities with some poorly mismanaged transportation systems and no sense of direction combined with expensive food made it a little difficult to fall in love with. 
6. Always travel like a local. I mean, I already knew this, but I knew it even more since I'd never taken the train outside of Germany when living there. 
7. Our exchange daughter does not always like to go to many museums on vacation and spend a lot of time looking and reading everything like I do. Find her a bookshop and you're golden.
8. Buying laundry soap in the ghetto of a French speaking country is not exactly ideal.
9.  Don't let Belgian buses kidnap you. ENTER FROM THE FRONT - they're not the same as Germany!
10. Belgian fries really are better.
11. Vacation isn't a time to relax - it's a time to get out and do stuff!
12. Candlelight wine cruises through Amsterdam are fun. They're even more fun when they stop for a short tour of the Red Light District, and a couple mysteriously disappears from the remainder of the tour.
13. Buying tickets online to the Anne Frank Huis might look sketchy (trust me, it looks sketchy) but it was an EPIC WIN. 
14. No one is kidding about the line to the Anne Frank Huis. By the time we entered (1/2 hour before it opened, we got early entry!), the line queue was around the building, and halfway down another block ... so an easy 2 hour wait minimum. By the time we exited, I'd estimate it was probably 2 city blocks long.
15. Speaking English isn't a crime or shocking to anyone in Belgium or the Netherlands. In fact, so much more English is spoken there than in Germany or any other country we've traveled to, it was like Spanish in America. Except that everyone could understand you ... and most Americans' Spanish is like baby talk. 
16. Take your internet capable phone with you. Even though you can't call people, you sure can e-mail or FaceBook them and post teasing pictures of you and your hubby and daughter.
17. Hotels in Bruges are cheap and SUPER nice.
18. Hotels in Brussels and Amsterdam are expensive and mediocre at best.
19. Renting an apartment in Brussels was kind of cool.
20. Renting an apartment in Brussels was kind of not so cool. 
21. If you forget to eat an unopened sandwich that you bought on the plane, the U.S. sniffer dogs will find it, and get you in trouble and have all your things looked through just to throw the sandwich away ... the sandwich that cost you about $12.

I'm sure there's more I could put here, but let me just say it was a vacation we'll never forget, and believe me when I say we took thousands of photos to prove just that. 

My Crafting

I've mentioned it in the past, but I do a lot of therapy in the form of crafting. It helps to develop my fine motor skills, range of motion, nerve sensitivity and muscle definition. Therapeutic Creations is what I've dubbed my online shop and if you follow that link, you can see the things I've been able to accomplish. Every purchase supports me and hopefully creates awareness of my disease.

If you know of local craft fairs or events that are inexpensive where I can sell my items, please let me know. Anyone who writes articles is also welcome to interview me for a piece as long as it highlights my disease to create awareness so please let me know as well. I was featured last year in my company's monthly newsletter that was distributed to several thousand employees and it would be nice to gain a larger audience and following. Here, and with my shop.

Rough Around the Edges

I don't pretend to be anything that I am not. I try always to be myself. But, it seems, no matter what I do ... many people do not like me. I'd say that that is fine with me, but really I don't think that it is.  At first, I might seem very collected, very intelligent, very nice ... and then you get underneath the protective layer and there's just me. Naked in all my rough edges.

I don't think that perfection is humanly possible. In fact, this world in itself is an imperfect place. We live with famine, disease, natural disasters, and evil as examples. so, I take pride in my originality and uniqueness. I think that the continual strife towards perfection is ridiculous to say the least. I have Kienbock's disease, and I can't dribble a basketball, I can't throw a Frisbee, I can't drive like everyone else, I can't go rollerskating anymore, I can't scrub dirty dishes, I can't push myself off the ground ... what are we doing torturing ourselves? Everyone has things that are wrong. Why push perfection?

I figure, if I go through life only doing my best and being my best - that is the achievement worth the fight. Granted, I think we should all make ourselves better. I'm continually reworking myself.  For example, I used to hate when people played jokes on me. Now, I am slowly learning to accept the consequences of having "real" friends who know the importance of humor, laughter, and equality. None of which can be achieved if we aren't a little goofy and sneaky.

I let Kienbock's disease define a part of my life. I own it. I respect it. It has taught me many important lessons, and it gives me many important challenges. I know that with my disease I can educate other people, and teach them about degenerative bone diseases and how it affects the human body. I let the Kienbock's be a part of my person, my psyche. I am no more or less than any other equal, yet I have something they may never have and it sets me apart and I accept this.

The worst thing for me is desperately wanting to be close to people, but ultimately ending up disappointed no matter what. Everyone lets me down in ways I need them the most. Often, I don't know what this is but I sure as hell know what it isn't. People might think that this is something they understand ... but I don't think I know anyone similar to be honest. I am dejected over the fact that I can count the true and real friends that I have on one hand. I would like it to be two. I would like people to care. I would like for them to want to know me, to respect me, to respect my differences and opinions, to share a friendship with me. I would like people in my life, but I fear my rough edges often prevent this. I mean, I say completely weird and/or inappropriate things at crucial moments, I act out, I beg for attention, I shy away from attention .... it's all a weird carousel ride in my world.

I know that I am not perfect, and I don't want to be. Perfection is not a fun aspect of human existence, and I reject it. But, I do know that I always have room to grow, time to change, and space to just be me. No matter what.

Therapeutic Creations

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

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

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

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

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

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

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

Thankfulness

It is easy for me to get lost in my memories and past lives. I say past lives because many of those memories surround a person I am no more. When it comes right down to it though, I am truly thankful for where my life has led me today, despite my failures, despite my health, despite my shortcomings, and despite any other obstacle.

I am thankful that I wake up every morning.
I am thankful that I am alive.
I am thankful that I can function on a daily basis.
I am thankful that I have an amazing and supportive husband.
I am thankful that my husband is thankful for me. :)
I am thankful for my two cuddly pets.
I am thankful for my sense of humor.
I am thankful for my home, and the things in it.
I am thankful for my education.
I am thankful for my creativity and my ideas.
I am thankful for truth and enlightenment.
I am thankful for being humbled by Kienbock's disease - because without being thankful for everything else on this list, I might not have become the person I am today with Kienbock's disease.

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.

It's Funny When People Don't Care

It's funny when people don't care to keep listening, to keep reading, to keep asking. At work today, I realized that after telling a co-worker I had a bionic arm (that no, I cannot karate chop people with), his lack of questioning me and my scar was hilarious.

I normally wear sleeves to cover up my scar. Mostly from UV rays, but also because people used to stare. Rudely I might add. My husband's former soldiers in the military would just sit there and stare, and then he'd say something like "You looking at my wife's arm? Yeah, she committed suicide." They would become incredibly embarrassed by this. This last year, I haven't worn a sleeve to cover up my scar. Mostly because the nature of my work doesn't afford the opportunity of gawking.

So today, when he questioned nothing about me, my life, or my disease, I found it hilarious. Why do we place so much value on what people are hindered by? We shouldn't. People can't help a lot of things. In fact, there's very little that people can control. You were born into a family, a country, a culture, a religion and environment that you had no say over. It's ironic that we think these things matter so much when in fact, they matter not because the luck of the draw could have been ANYONE.

To him, it didn't matter that I have a bone disease. I wish I could be more like this and not care, but when it affects everything you do in your physical interactions on a daily basis, it's hard not to consider it something to care about. True, if he had asked questions I would have acquiesced and answered him. I'm not a person to shy away from questions no matter how difficult they may be unless I feel lines are crossed.

It really is funny that there are those rare people in the world that don't care where you've been or what you've done - because I have only ever met one honest-to-goodness person like this. It's funny that they are so hard to find. I'd love to find more of them. Judgement reserved, accepting people. I need real humanity, friendship and acceptance. I need people to stop rushing how long it takes me to do things, to stop commenting on the shortcuts I take, to let me have my chance to do it myself, and so on.

I might own my disease. But I don't want to be judged or labeled by it.

The Land of Fallacy

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

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

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

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

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

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

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

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.