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?

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?

Nervous much?

Well, since I had been finding out the tiny bit of knowledge and research there is out there about Kienbock's Disease, I started to get really nervous. There are several different types of "treatments" for Kienbock's depending on the stage you are in, and the severity of your bone conditions.

My radius being significantly longer than my ulna was causing the intense, literally bone crushing pain. Dr. P. said that if we didn't relieve the pressure on my hand bones (aka, carpal bones) then worse things would start happening. His goal was to stop the degradation of the collapsed lunate and potential development of further fractures or avascular necroses while also attempting to slow down the eventuality of arthritis. Now, once you develop arthritis with Kienbock's Disease, you're pretty much screwed. I mean, yes, I have permanent damage and I will be permanently disabled and I will deteriorate over time ... but lucky me this is not a fatal disease. Just a crippling one.

So, the first order of business in treating my Kienbock's would be a join leveling surgery. This would even out the playing field for any doctor treating me in the future. So, what is joint leveling?

It has nothing to do with joints. Joint leveling is the process of mathematically extracting a portion of bone in order to shorten it, or to cut the bone to lengthen it. They were literally going to saw my bone in half, take out a sizable chunk, drill holes in the entire bone, secure it by screwing it back together with a titanium plate and screws. Mind blowing, right?

Well, needless to say I was antsy. I wanted to get this surgery over and done with. I wanted pain relief. I wanted to start the process of dealing with my disease. I wanted a lot.

This is when the eye twitch started. I called and scheduled my surgery for Thanksgiving Day, November of 2009. See, Germans don't celebrate Thanksgiving like Americans and Canadians do. In fact, most Germans think it's all cliche like on the TV or in the movies. The last 2 Thanksgivings we spent with our German neighbors who had never eaten turkey, stuffing, pumpkin pie, or green bean casserole. This year, I had an eye twitch, and an itch to have a small, intimate Thanksgiving prior to my surgery with my husband.

Well, I had this eye twitch the entire 3 months before my surgery. It was a pain the the butt to say the least. I wear contacts normally, but was remanded to my glasses. I went to the eye doctor before surgery to get my regular check-up, order new glasses and contacts, and to complain about the eye twitch. There was nothing he could do. He said it was an unconscious bodily response to my nerves regarding my impending dissection.

I love school. I love music. I love teaching music. For some reason, I felt like I lived in a blur this entire time. I have no idea how I got through school, teaching music lessons, and recording my music (just in case the surgery rendered me incapable to play ever again).

I worried non-stop. My family has a history of allergies to anesthetics. I've had my fair share of problems. Once, I had a cavity when I was 18. I went to the dentist so they could drill it out and fill it. They gave me 6 shots and I still hadn't numbed so they just drilled completely through my tooth and filled it. It was the most horrific experience I've had at a dentist, and has scared me away from them forever. When I went in to Atos to to a pre-surgery screening, they asked lots of questions and I tried to tell them about my family's allergies. Come to find out later, they never understood what I was saying ...

I also had my husband take me into my school to get me registered as a disabled student with student affairs, and to the bank to tell them I wouldn't be able to use my right hand so if I signed checks or came in to bank, they had a note on my account. It's permanent now, just in case something ever happens while I'm still banking with them. They're nice about that.

One of the weird things I was worried about was my handwriting. I have always been complimented on my neat, legible and pretty handwriting. I'm no Renaissance woman with a pen or pencil, but I do pride myself on having nice handwriting. I kept asking my husband if my handwriting would change. I didn't want it to change. I also asked him if I'd have to re-learn how to use my hand and arm. He had no answers to anything.

I didn't stop being nervous even the night before my surgery. I ran over to my neighbors and asked if they would take my dog for the next day and night. Their little boys love my dog. Although the boys speak no English, I taught my dog some German commands - and my dog was used to playing with them all the time anyways. My neighbors in Germany were wonderful. We had 4 sets of neighbors that were were really friendly with, and then there was Anne and Benedict. They were fabulous. So, when I went freaking out about my dog, Anne gave me a present. I now had a lucky pig, which I took with me to the hospital, and that I usually keep in my bedroom by my bed now.

In spite of all the nervousness and fright I had been slowly building to a climax, I still wanted to do this. If you don't treat Kienbock's disease, you run the risk of further complications. I'd spent the last 8 years getting worse because no one took care of it. The nerves might have been hard to handle at times, annoying to my husband, annoying to me (stupid eye twitch!), but I was ultimately set. I wanted everything fixed. I wanted my life back.