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.
The Adventures of Kienbock's Girl
An account of my life post-diagnosis with Kienbock's Disease.
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Tuesday, December 8, 2015
Thursday, August 13, 2015
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?
Thursday, July 23, 2015
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.
Tuesday, July 21, 2015
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!
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Monday, July 20, 2015
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.
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Tuesday, July 14, 2015
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.
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Thursday, July 2, 2015
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?
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