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.

Europe Bound - Vacation Time!

With everything that has been keeping my husband and I so busy, it's difficult to find time lately to keep myself motivated to blog when I have a million other things to do. This MAY or MAY NOT have been precipitated by the anniversary of my mother's death, my 11 year wedding anniversary, and the planning of a European holiday with our exchange daughter and her family, as well as some much needed city hopping on the continent. So as of Saturday morning, we will be on a plan headed to our adoptive homeland, Germany.

In the past I have had travel issues when flying alone with my disease. The airlines I flew were not very helpful in assisting my disability and caused me outrage when I was seated in the front of the plane in an aisle seat with baggage overhead that I couldn't put up or get down. Since this time I am traveling with my husband, this should not be any issue - but hey ... we already found out that they are no longer feeding you any meal on transatlantic flights when my husband called to tell them I have some severe food allergies. If you spend $4,000 on plane tickets IN COACH to Europe, and the flight is 8 hrs or more, NO FOOD FOR YOU! (Gargantuan eye roll.)

Anyhow, we shall be cavorting around Europe for what we know will be a relaxing vacation before my big surgery. More on that soon.

Making Plans?

People suck, and then they suck some more. Do I sound jaded? Well, dammit (correct slang spelling, looked it up) I AM jaded.

I have slowly been making my plans for surgery. Not once has my husband been able to attend an appointment, and my doctor has been looking forward to meeting him, but I get the feeling the doctor feels like me: Is there anyone I can count on?

I don't mean the people at a distance who "wish they could help." I don't mean the people who are understandably busy or laden with plans. No. I'm talking about the regular, everyday people in my life. And, I'll admit it, there are a few people that I don't want help from. But, I think it's a fair assessment and not an unnecessary one.

I've been telling people about my surgery now for about 3 months. I've known that long I'd have one, only just recently did it get scheduled.I've had a few people say they may be able to do something for me. I had one coworker ask if there was anything they could do, but that's about it. I mean, I GET that people have busy lives. I GET that you have a job and a family. I really do. But, how come when anyone else asks for help, everyone jumps to the rescue like it's some honor? It's like ... if I'm not convulsing on the floor in front of people's eyes, they don't want to help or offer help.

When my mom struggled with cancer I sent her clothes when she needed clothes, I sent her gifts to cheer her up, I'd call her almost every day if she didn't call me first, I'd buy her groceries, I'd take her places, I'd let her spoil me with attention and give her assistance with sedentary things like helping her to the bathroom, bringing her medicine or food, etc. I think this is exemplary of what I could do living 4.5 hours away for 2 years, and 2200 miles away for 1 year. Heck, one year, I even flew out to be with her for a surgery. It's that important to me to be a support, to be needed and to be helpful.

I find that the reason why I am so willing to do this for others is that I want it desperately in my life. I can't do a lot of things and need help with numerous others. I'm imagining the worst scenario with this surgery, and seeing myself incapacitated and home alone. It's happened many times before with previous issues - what's stopping this time from being any different? When I say I have no friends, I pretty much mean it. I have a few very very good friends who live too far to be able to do much - understandably. But when I look around for support here where I'm at physically ... it's like a dry well. There may be a few roots to grab onto, but they're bound to break and leave my high and dry.

I look at my life and am not happy with what I see around me. I give up on others because they give up on me- and there's only so far I'm willing to go without getting even a thank you in return let alone reciprocation. I've bent over backward for so many people in my life that it just ends up hurting me. I'm done being hurt.

Oh I know, I know. There are people with less in the world. There are children without parents who love them, there are elderly people without children and family to care for them, on and on. My point is that I have a network of people in my life that I know and yet I can never get what I need from them. And it's not that they don't know how to give it or what to give.

I'll say this final thought: I'm just saying IT WOULD BE NICE. How I feel is exactly that - how I feel. I can't change it. Much of what I say and see is a reality. I'm not looking for that "I would if I could," I'm looking for the people who care. Not that there are any of them, but IT WOULD BE NICE. I think I do a lot for others and am kind and helpful. IT WOULD BE NICE to have it in return. It has to be my time sometime. It's been too long for it not to be.

Surgery 2.0

It's been awhile since I've posted, but there is a new development in my prognosis.

So, it all started several months ago when we were finally able to retrieve my medical records from the military. I researched the best orthopaedic hand surgeon in my region, and also got advice from a co-worker/girl friend whose aunt is in the industry - and funnily enough in both cases, it was the same person.  Dr. L is a very adept practitioner who is one of the top rated surgeons in the Inland Northwest, not to mention Washington State.

I've had two visits with him. Initially, it was to get an idea as to what was going on in my wrist currently. I haven't been under a doctor's care since late 2011. So, I wrote him a really long letter and dropped off a stack of about 90 documents all relating to my disease. He agreed to see me, and I promptly had x-rays and a new MRI. He took special interest in my career, in my home life, and in my plans to travel in July. On my second visit, he informed me that my radial joint leveling caused a very profound difference in the length of my ulna to the natural line of bone growth. In the image of my right hand vs. my left hand on the computer screen, there was literally almost an inch of difference from hand to hand. My right hand bones have started to develop severe arthritis due to this. So, now my ulna has a positive difference, exacerbating the progression of the disease.

Originally, Dr. L wanted to do an ulnar joint leveling in order to correct the issue and alleviate the pain while also slowing down the progress of the disease. I told him I would think about it and get back to him. In the meantime, I had a cortisol shot. He injected a 6 inch needle into my wrist and after about a week, I stopped feeling the pain so severely. I still can't feel it very well, and it's been almost 3 months - but I know it's wearing off. My condition is so severe that he was afraid the shot wouldn't do anything, and they always say that the first shot is the most effective - meaning ... it's not good that it's only lasted a short period of time. The idea was to hold me up until my big vacation this summer. So far it's worked.

Today, however, I went to see Dr. L because I decided surgery was the best solution at the moment.  What I thought originally, and planned for originally was the ulna joint leveling. But, instead I got an odd change of course. See, the doctor had reviewed my MRI and X-ray images and decided that we could attempt revasculation in order to attempt to save the bone. It appears that my bone isn't completely dead as was previously believed, and that an attempt to revasculate could save the bone. There are many reasons for this, which I will not numerate here. But, below is the Pedicled Vascular Bone Graft and Lunate Reconstruction - which is what I will have done. Basically, a marrow transplant, bone graft, and revasculation will all occur in the same surgery.

I am extremely nervous and apprehensive of what is to come with this new chapter. I don't currently have a lot of support or even a "support network". But, Come early August, I will be in a new, vulnerable position that I'm terrified to be in. 

I know I just barely scratched the surface of what is going on, but feel free to ask me questions.