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?

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.

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.