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.