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?