Oh boy, here’s a tough one.
I’m not even sure where to begin.
When chronic pain takes over your life, you have to say goodbye to a lot
of things you once loved. Dancing, art,
working out, running, it’s different things for everyone. You also have to say goodbye to a lot of
things you never even thought about, like being able to wash your hair AND
style it within the same 24 hours, or load up the dishwasher then vacuum while
it’s running. You have to chose which
you want to do, because they all hurt so much that you can’t get them all done
in the same time frame as you used to.
You end up too worn out from one to do the other. You start clinging to anything familiar,
things you used to love, some amount of “normalcy” for you. After a while, change in general and having
to let go of things for other reasons can seem like a painful reminder of the
life you once had, the life you expected to have, and how this is not it at
all. Break ups hurt more, whether romantic
or with a friend or relative. Moving is
harder, not just because of the physical pain that comes with moving, but because
you can’t help but think about where you had planned on being in your life vs.
where you are going now. Finishing
school, switching jobs, making new plans for the future as the world changes
around you, it becomes a new kind of hard.
Change can be difficult for everyone, but when you live with chronic
pain, it can be utterly depressing. I
recently finished college, and I am working on getting a new job. I had a whole list of things I wanted to be
when I grew up. I was a pretty
reasonable child, so most of the things on that list were perfectly attainable
goals for a healthy person. Of course,
there were some not-so-likely things on there, too, but I have no way of
knowing what my chances would have been at this point. The whole list ended up being out of my
reach. Literally everything I wanted to
do with my life was physically involved.
I can’t do any of it. I had to
make a new list. I had to come up with
things that I would be able to tolerate doing and try to convince myself that these
jobs are something I WANT. It’s
not. I keep telling people I’m working
on getting my “dream job” but what I mean is it’s my dream job out of the
things that I’m capable of, and that’s going to have to be enough. This is what graduating college and looking
for a better job has made me feel. This
is what this new, wonderful life experience is to me. This job IS something that I really want in my
life right now, and I’m thrilled that it might work out, but as well as being
thrilled, I’m also reminded of everything I wanted to do but can’t do,
everything I thought I might be doing with my life now but I’m not. It’s hard, it’s conflicting. I’ve always been someone who thrived on
change, but when every change seems to lead to something less enjoyable, after
a while, change starts feeling like the enemy.
You cling to what you know, even if it’s killing you, because you’re afraid
that if you let go and let yourself move on, you’ll only end up in worse and
worse positions in life. Chronic pain is
sneaky like that. It becomes too painful
to do something, you are forced to stop, but you think it’s just a break. You don’t know it’s forever until years have
gone by and you realize you can’t get back.
The important thing, though, is that you keep moving forward. Maybe you’ll go up, and maybe you’ll go down,
but life is basically a train on a track behind you, coming at you at top
speed, and if you don’t move forward it will destroy you. Moving on with chronic pain, from anything,
is hard and confusing and painful, but if you aren’t willing to risk it getting
worse then you can never expect it to get better.
...With Chronic Pain
A blog about my life with fibromyalgia.
Saturday, April 21, 2018
Thursday, November 2, 2017
Healing Art Showcase Piece
"It often feels like your options are to lose yourself to your symptoms, or lose yourself beneath the side effects of the medications that correct those symptoms. Sometimes you have to reach for help, but you can break through and overcome it all."
This is what I recently submitted for a healing art showcase, a photograph and a statement explaining it, but lets talk about this more honestly. It's a mental health healing art showcase, so I kept my statement vague enough to be applicable to mental or physical health. I'm far more familiar with physical health, but right now everyone is far more interested in/focused on mental health, so I went along with it and kept my art piece and statement open to interpretation.
They also wanted it to be uplifting and inspiring, so I wrote some crap at the end there that I haven't actually managed to accomplish myself. I don't know anyone who has. This is the whole reason we want to cure the condition rather than manage the symptoms. Reaching for help, trying to overcome debilitating symptoms or medication side effects, it isn't something you can just "overcome." You have to choose which is less debilitating. Will you be able to get through life and function better with the side effects, or with the symptoms? This is a choice so many of us are forced to make. Sometimes, I can't even decide. Savella helps the fatigue for me, and nothing else does, but it also upsets my stomach very much. It basically depends on what is going on in my life at the moment, and how easily I can access a bathroom. Then again, sometimes I'm so tired I have to miss work or class because I can't wake myself up enough without it to drive that day.
Recently, Lady Gaga told everyone about her struggle with fibromyalgia. She has ups and downs like the rest of us, she has flares and she has good days, and when she is having a good day, the media likes to report that she is "recovering from her fibromyalgia." This is the kind of crap that is confusing the world, and now I'm honestly guilty of being part of the problem by making up some inspirational nonsense because that's what people want to hear. On one hand, being positive and inspirational and saying things that aren't quite right like fibromyalgia is something we can overcome, or recover from, gets more attention. It gets people to recognize it more, which is definitely a major goal right now. On the other hand, now people think that it IS something that can be overcome. Luckily, I kept mine vague, so I could have been talking about overcoming symptoms or side effects from something that IS possible to recover from, but the media sources who keep talking about Lady Gaga "recovering" are going to get a lot of people looking at the rest of us with fibromyalgia saying "why aren't YOU recovering?" or, when she does have another bad flare, fans will be furious that she had to cancel concert dates for something she has already "recovered" from.
I don't have a closing statement, here. I have no nice, neat conclusion, because that isn't how fibromyalgia works. I do encourage you to reflect on the points made here, though. Think about the pros and cons of the way you present an illness before you start talking. My other point was that sometimes you have to choose side effects over symptoms, and there are people out there who will tell you that if you are taking a medication that you know has negative side effects for you specifically, then you have a problem. It isn't that simple. If the side effects are more manageable throughout your day than the symptoms it manages, you aren't just automatically some sort of addict for continuing to take it. It's okay, you're fine.
Sunday, July 30, 2017
Painkillers: Breaking the Stigma
Painkillers: Breaking
the Stigma
Let’s talk about painkillers. I’m sure you’ve seen similar sentences
before, followed by a lecture about the dangers of narcotics. That’s not what I’m here to talk about. Anytime anyone talks about narcotics or
opioids today, it’s all about the evils of the drugs. I understand why this happens. They are abused a lot, they are dangerous,
they can ruin your life or even end it.
That isn’t ALL they do. This December,
I will be finishing my bachelor’s degree.
Last year, I went to my sister’s wedding and I danced, and I didn’t
spend the following day in bed, or next to a toilet puking because the pain was
so unbearable. I maintain a fairly clean
house and a job. All if this is because
of narcotics. When taken properly and
carefully, prescribed by a good doctor with a fair deal of monitoring, these
drugs are changing some of our lives for the better. There are a lot of people out there taking
opioid medication for pain, and they do come with negative side effects, but if
they help enough to increase our quality of life even WITH the side effects,
and all other options have been exhausted, then most pain management
specialists will determine them worth taking.
With this decision comes a lot of harsh judgement,
though. People hear so much of the
negative and basically zero of the positive, so when they find out you take
serious painkillers, they immediately start making assumptions. I’ve heard people say they would be
uncomfortable with someone taking those medications being around their
children. I’ve also nannied in the past,
and have always been straight forward about my situation, and there have never
been any issues. I function on painkillers
like you function without them. If
anything, people who know me and have seen me with and without them would
probably feel more comfortable with me TAKING them and watching their
kids. It’s really hard to keep a clear
head when your consumed with pain. You
can’t move very quickly, which I’ve learned is actually a pretty important
skill in watching multiple little ones, and it’s hard to pick them up. Another assumption people make is that
everyone who takes them regularly is an addict.
That’s not how it works. This is
where being careful and having a good doctor comes in. Those of us who do take them regularly, and
properly, usually worry about this a lot, actually. I recently tried a new doctor in an attempt
to save money, and he looked at my medical history, saw that I have been taking
narcotics for pain, and immediately decided I was an addict and needed
counseling. I’ve been to many doctors
due to moving, and I have heard of people experiencing this, but until that
day, I had not experienced it myself. I’ve
been in pain for a decade and a half that has gradually gotten worse throughout
the years. I was hardly able to do anything a few years ago and it was
terrifying, I had tried everything except for serious pain medication. I had been avoiding it because it is scary,
it does come with a stigma attached and I didn’t want to be a drug addict. I had a doctor explain to me that it might be
my best option, we would be careful and pay close attention to everything, no
secrets, just give it a try. It changed
everything. Every doctor I’ve been to since
then has examined me themselves, looked at my history and everything I’ve
tried, and determined that yes, that is in fact my best option until something
better is discovered. This new doctor
was a terrible doctor in very many ways, but the way he treated me because I
take narcotics was the most horrible thing.
I cried all the way home. I’m
still crying, and that was a month ago.
I went back to my previous doctor after that, who was also shocked and
horrified that I had been treated that way.
That is a very ignorant way of thinking, especially for a doctor. I’ve told everyone about all of the other
reasons he was a terrible doctor (like telling me that all of my pain, which is
worst in my knees and ankles, is actually being caused by neck degeneration
which requires expensive injections?) but I kept this part quiet, because I’m
scared that people will find out and start thinking that I am just another drug
addict, lying about pain to get drugs. I
wasn’t lying when I was twelve years old and had to end my dance career. I wasn’t lying all the times I had to sit out
fun events because of the pain growing up, without decent medication because I
was too young. I’m not lying now. I’d rather be living a normal, physically
active life than taking painkillers to live a normal-ish life, mostly sitting
down.
What I’m trying to say is that opioids, when taken carefully
and properly, as prescribed by a good doctor, can be a good thing. When abused, they can kill you. If you aren’t careful and mindful, you can
become addicted and end up in serious trouble.
They are also bettering peoples’ lives.
They aren’t only bad. They aren’t
only addictive. They aren’t only
dangerous. When you find out someone
takes them, don’t start judging them, or throwing out facts about how bad and
dangerous they are to them. They most
likely know. If you know they are
abusing them, or getting them illegally, or you knew them before they took the
medication and there is definitely something wrong now, you should say
something, absolutely, but just being on pain medication does not mean someone
needs a lecture or your judgement. Break
the stigma.
Sunday, July 2, 2017
Chronic Pain: Am I Doing Enough? (And Why Don't I Qualify For Disability?)
Hello, Victorya here.
I’ve had fibromyalgia since 2001.
I am 27 years old now, and 2017 has been a pretty rough year. Job issues, insurance issues, I had found a
medication that works for the first time in my life a couple of years ago but
cannot afford it this year. This also
happens to be my senior year in college, so I was really counting on being
fully functional, but I’ve come too far to quit now.
Chronic pain effects your life in many ways.
When it starts plays a very big
role in how it changes your life. I was
a child, I had to eventually quit dance, and going to school got considerably
harder over time. But I was young. With youth comes resilience. I adjusted, I managed, I learned how to live
with it. I didn’t have bills to pay, I
didn’t have children to care for. By the
time I DID have bills to pay, I no longer knew life without pain. I was used to being this way. When you are an adult with an adult job and
adult responsibilities and the pain becomes significant, whether gradually or
suddenly, it is much more disruptive to your lifestyle. Quitting dance for a child who had always danced
and had never even considered other options in life seems rather disruptive,
but there was still food on the table, a roof over my head, and people loving, supporting,
and believing me. It is quite different
for adults. First of all, there are all
of the doctors appointments. For about
two years, I think I had a new appointment every month at least, trying to get
answers and find a way to fix it. That’s
a lot of time off of work right there, and working is harder with all of the
pain of course, so a lot of people end up taking a leave of absence to just go
to all of the doctors appointments at once to figure it out and get back to
work. When the answer comes, and it says
“this is your life now”, it is pretty shocking news. It is hard to accept that you are just going
to be in pain forever, especially when the pain isn’t just in one place. So then you have to learn how to work like
that, if you can. It depends on your
job, really. Even a nice office job with
a big, comfy chair is going to be difficult with all of this new pain. The pain tends to disrupt sleep, too, so now
you’re exhausted, and in pain, and trying to work 9-5 to keep food on the table
and a roof over your head and pay off all of these doctors who, in the end,
basically just said “deal with it.” You
also have to keep your laundry and dishes clean. You have to keep food in the house, and you
soon learn that grocery shopping is a pretty big task itself, with all of the
walking and reaching and temperature changes throughout the stores.
There is also the emotional toll
that chronic pain takes on all of us. We
try to stay positive, but there are so many things eating away at us all the
time. Humans hate uncertainty. We hate not knowing what the weather will be
like tomorrow, we hate not knowing whether or not that person is going to call
us back about the promotion, we hate not knowing whether or not our favorite
character ACTUALLY died in that cliff hanger season finale, so it stands to
reason that not knowing what our pain will be like tomorrow weighs pretty
heavily on our minds. Some days are
worse than others, and it’s hard to make plans when you can’t be sure if you’ll
feel up to it. This can lead to social
isolation, which of course can cause depression. Sometimes, just the pain itself can cause
depression. Being in pain all the time
tends to do that to people, as does not getting adequate sleep at night. The struggle of wondering how long you can
keep it up, working 40 hours a week and maintaining yourself and your home,
gets pretty difficult after a while, too.
There is also the matter of people believing and supporting you. Nobody expects a happy, healthy, athletic
child to suddenly start lying about pain, or imagining pains that don’t really
exist. This is different for
adults. When an adult suddenly starts
needing to take time off of work for doctors appointments, and because they are
in too much pain to work, not following some sort of accident, there is a lot
of “Why would this start now? You are just trying to get out of being an adult”
and “It’s probably just stress, you need therapy.” Even following an accident sometimes, after a
few months, people start telling adults to “suck it up” and get back to
work. “Everyone has struggles, get over
it.” That is not necessarily healthy advice.
Individual differences are very important to remember.
Most of us
know at least four people, right? They
are all different. They handle stress
differently, some are positive, some are negative, some are pretty indifferent
to everything, and if we all go through an experience together, we all handle
it differently. Maybe we lose someone
that we all cared about. One of us seems
the same as always, one of us keeps talking about it being “part of a plan”, or
how they are just glad that the person is no longer in pain or something. One of us can’t even speak because they are
so upset, but everyone loved that person the same. People just handle things differently. Is it a difference in chemicals and physiological
makeup of our brains? Is it a difference
in how we were raised? It is probably a
little bit of everything. Either way,
this is just as applicable to chronic pain.
For the sake of this making sense and being easier to understand, we are
going to assume everyone I’m talking about with chronic pain is around an
average of a 6 on the pain scale, and they all developed the pain in early
adulthood. Eleanor has always been a
bright and positive person. When her
pain started, she stayed that way, going from doctor to doctor, but over time
her medical funds were exhausted, and she still had no “cure.” Eleanor doesn’t get depressed, but she does
decide to give up. She cannot afford to
deal with it anymore, she cannot do any of the things she wanted with her life,
and she does not understand why this would happen to someone like her. Her health insurance is only willing to help
her on so much, so when it comes time to start trying all of the medications,
some of them are just too expensive. Now
she is in pain all the time, and when applying for government disability checks,
she fills it all out under the firm belief that she can no longer work, go to
school, do leisurely activities, or leave the house unless she knows that they
have motorized shopping carts where she is going. Eleanor is approved for government
assistance. Linda has always been a
pretty neutral person. Nothing ever really
seemed to make Linda feel incredibly sad or strongly overjoyed. Linda has a good job with fantastic health
insurance, and they allow her some time off when the pain starts to try and
figure it out. Upon finding out that it
is chronic and lifelong, she goes through the process of trying every
medication that might possibly work.
While doing this, she continues to work, but notices she is not able to
work as many hours as she used to. She
applies for disability, but because she feels that she can still work some, is
denied. This is exactly why some people
with the exact same conditions, in the same amount of pain for the same amount
of time, manage to get disability, while others do not. This is why we are all stuck wondering, all
the time:
Am I doing enough? Am
I doing too much?
My average
pain level is a 7 without my medication.
With the meds, it’s a 4. That is
life altering, right? But when I no
longer had my medication, I didn’t stop everything I was doing. I couldn’t.
Currently, I have two part-time jobs, I’m a full-time senior at UNT, I’m
part of a research lab team at school, and I somehow accidentally ended up in a
class where I have to do volunteer work with disabled people. I feel like taking care of myself every day
should count, but apparently not. I
cannot afford to quit either of my jobs.
When I finish my bachelors, I will be qualified for some better jobs, so
I can’t really quit school either, or I will just stay stuck in this loop. If I ever want to get into grad school, which
would make it easier for me to get an even better job so I do want that, then I
need this research team crap. I have
been barely getting through each day this year.
I keep getting really behind on house work, and home work. It’s a lot to do, especially when I haven’t
had many nights of quality sleep because of the pain. Here is the thing, though. There are people in as much pain as I am,
there are people with more debilitating conditions than mine, and they are
doing more. Maybe not even more, but
they are doing the same amount as I am and doing it way better. There are also people in as much pain as me,
or less, and they are doing far less than I am.
I look at the people doing more, and those people doing less look at me,
and we all ask the same question: Am I doing enough? Am I trying hard enough? I literally feel like I am doing as much as I
possibly can, so it is really hard to see people doing better than me who feel
as crappy as I do physically. Then
again, I look at people who are doing way less, people like Eleanor collecting
their disability checks, and it’s hard not to wonder if I’m just doing too
much. Am I pushing myself too hard? Do I even need to do all of this?
This whole piece has made it pretty clear that there are a
million differences in everyone’s lives that come into play. Yes, some people are going to do better than
you. Some people are going to have it
easier than you. But only you know how
much you can handle. Keep doing your best,
keep working your hardest. As long as
you know your limits and listen to yourself, body and mind, you are doing
exactly as much as you are supposed to.
You are doing enough.
Here is a photo of me listening to my textbook at work.
Wednesday, June 28, 2017
Fibromyalgia: Things I've Tried and My Brief History
This is just a list of the things I can remember that I have tried for fibromyalgia since it started in 2001, and a brief history. Please keep in mind, Fibromyalgia is different for everyone. Some of these things help for some people, or at least that's what I've heard. If you have a food intolerance or vitamin deficiency, then a certain diet will almost definitely help the pain at least a little bit.
Diets (none ever helped): Gluten free, meat free, whole
grain, dairy free, sugar free, caffeine free, paleo, Atkins, low sodium, Weight
Watchers, tomato-free (three full years), all natural organic
Vitamin Supplements (none ever helped): Multivitamins, fish oil, calcium, b-12, vitamin D, iron
Exercises (all made the pain worse): Yoga, Pilates, Water
aerobics, tai chi, meditation, ballet
Medications: Tylenol 3 (helped a tiny bit, very briefly), Tramadol (helped a tiny bit, very briefly) Lyrica (did not help the pain), Savella (did not help the pain), Cymbalta (did not help the pain), Fentanyl (absolutely nothing), Butrans (helped the pain a lot, still have pain though, and very expensive), Norco (helps the pain just enough to be significant), various antidepressants (never help the pain)
Other: Salt Baths (helps a tiny bit while I’m actually in
it), Massages (Help in a normal people way, not a fibro way? lol), Plexus (did
nothing), Juice Plus (did nothing), Weight Gain (from 118 to 145 over the span on a few years, made no difference in pain), Weight Loss (back down to 123, made no difference in pain), Physical Therapy (did not help, occasionally just hurt more), Ice (never helps), Heat (sometimes helps a tiny bit)
History:
Born with turned-in feet, slept in braces as an infant. I was never an incredibly energetic kid, I
appreciated bedtime. That’s not to say I
wasn’t active, just not energetic.
Always had pains, thought they were growing pains. Started ballet when I was 3. The pains got really bad in one ankle when I
was 11, then moved to the opposite shoulder as well. Saw a few doctors, went to
physical therapy which did not help. Had
to quit dance when I was 12 because the pain had gotten so bad. First diagnosed with fibromyalgia at Scottish
Rite when I was 13, but it was “unofficial” because I was “too young” to
diagnose for sure. Saw a million
doctors. Married at 18 and moved to
North Carolina. Started getting migraines,
prescribed daily Propranolol for the migraines which prevents me from getting
them almost entirely. Also diagnosed
with Endometriosis after diagnostic laparoscopy in October 2009, consistent
birth control (Yaz, skip placebos, immediately start next pack) helps a
lot. Re-diagnosed with fibromyalgia in
North Carolina in 2011. Moved back to
Texas in 2013. Continued working out as regularly as I possibly could, which
was less and less over time, until finally in 2015 the pain got so bad I could
not exercise at all anymore, beyond everyday things (cleaning, grocery
shopping, etc.). My primary doctor was
treating me with Norco, wasn’t helping enough, switched to Butrans. Literally life changingly helpful, went from a 7-8 on the pain scale most days to 4-6. Haven't been below a 4 in at least 7 years.
Friday, May 12, 2017
Why am I still pushing awareness?
Anyone who knows me, and has known me for a while, knows a lot about fibromyalgia at this point. Because of this, I've had people ask me "why do you still push awareness? Everyone already knows." But they don't. It's become so normalized in the lives of people close to me, that they forget that this isn't the case for a large portion of people. I push awareness because people with chronic pain are still believed to be 50% more likely to commit suicide than the general population. I push awareness because I still meet people ALL THE TIME who hear me mention it, see it written on my t-shirt, etc. and look like they've just heard a foreign word, and they ask me what it means. I push awareness because there are still people out there, men and women, children even, who feel like they have nobody to talk to because nobody believes them, or nobody cares anymore, everyone is just tired of hearing them complain, when they aren't just complaining, they're legitimately asking "how do I survive an entire life like this?" There are still people who think fibromyalgia is something made up by lazy people, old people, obese people, or mentally ill to explain away their aches and pains and get them out of doing things. There still are very few studies being done on how to fix it, where it starts, the long term physiological/psychological effects of chronic pain. If in my lifetime, somehow, all of this changes, I will stop pushing awareness, but for now, I push awareness because we still need it.
Friday, March 31, 2017
Cosplaying with Chronic Pain (Specifically Fibromyalgia)
I’m
Victorya, I’ve had fibromyalgia since childhood. For more of my backstory, look at some of my
older blogs, like Kids With Chronic Pain, School With Chronic Pain, or A Day In The Life . Currently, I’m
a full time college student with a part time job, a husband who works full
time, a dog, and a rabbit. As you can
imagine, I stay pretty busy. When you’ve
had fibromyalgia as long as I have, which is currently about 15 years if you
count it “starting” when it actually got bad enough to change my daily life,
the pain is constant. It doesn’t
stop. Some days it hurts more, some days
it hurts less, and it’s a pain that travels throughout the body, so there is
variation and fluctuation, but it never actually stops or goes away.
I’ve never been good at “relaxing”. Just sitting on the couch, watching TV or
reading a book, drives me crazy. I have
to actually be doing something, that’s what I consider relaxing, so when people
started emphasizing how important it was that I relax more and expressing
concern, I started finding some new hobbies.
Of course, everything hurts to do with fibro. Just typing this right now is painful. I found some hobbies anyways, though. Things that hurt less, maybe than other
things would. As long as I keep it in
moderation, it would be okay. I got
really into crafts. I paint, I sew, I
make dream catchers, I love crafts! I
have also always loved superhero movies and cartoons and comic books, and
science fiction shows. Star Trek,
Battlestar Galactica (the reboot), and X-Files, to name a few. I’ve always loved dressing up, too. I started collecting costumes and costume
pieces when I was a teenager. Sometimes
I would dress up for no reason at all.
So naturally, when you put all of this together, I ended up getting into
cosplay. Like most convention-goers,
weekends spent at conventions are my escape from reality. Unfortunately, an escape from reality isn’t
an escape from pain. There’s no escaping
that.
I started putting together costumes. I got my sister-in-law to join me. We cosplay together now. I break the work of putting together costumes
up over long periods of times. I do a
little here and a little there, so I don’t cause too much pain. The conventions, though. It’s 3 days of walking around. Three days of wearing cute clothes that I
have to move carefully in. Three days of
being in a loud, crowded building, full of ramps and stairs and hard floors,
taking pictures with strangers who get all up in your personal space, putting
their arms around you. The recovery time from a
convention is longer every year. In the
days leading up to it, I’m excited and I can’t wait, but at the same time, I’m
scared and I dread that pain that I know will immediately follow. I’m not going to let the pain stop me from
doing something I love. I don’t go about
things the way I did at first. I’ve
learned better. I stop and sit down a
lot. Like, a LOT. When I sit, I find a place where I can lean
back against something. I even take
stretch breaks throughout the day, as far as my costume allows. I stretch before I leave and when I come
home. If my costume includes shoes that
don’t agree with my body, I bring flip flops and only put on my costume shoes
for photos. I make sure I have plenty of
Epsom salt before the weekend begins, so I can soak in salt baths each
night. A big problem with fibro is also
temperature regulation, so I often carry a folding fan in purse and try to keep
some sort of jacket in my car, just in case, and make sure I know which
concession stands have ice available.
Dallas Fan Expo 2017Day 1 of the 3 days I will be spending at the con this weekend. I’m already in so much pain, there is swelling in various places, but I’m stubborn, and I’m not going to let this pain ruin my fun. I had a blast today, just like I always do. Pain definitely makes it LESS fun, but I still enjoy it more than it hurts. Pain has taken so much from me already, it can’t have this, too. Day one costume: Gogo Harley-Quinn
Day 2: Yesterday I wore gogo boots all day, which weren't too bad. They do have a bit more ankle support than a lot of shoes, so that kind of balances things out. We had a pre-judging for a costume contest that we had entered, and my costume involved colored hair spray. I decided to just sleep in the hairspray so I didn't have to use as much the next day. This meant no salt bath. I hate baths, to be honest, so I wasn't too upset about it. I was hurting when I woke up this morning, but not too bad. I wore flip flops all day today, because the shoes that go with my costume are heels, and that's just not happening. I only put the heels on for the costume contest. We didn't win anything, but we had a blast and met some awesome people. It was definitely worth it! Day 2 costume: Harley Hepburn
Day 3: Today I woke up, literally shaking from pain. I took it super easy all morning, ate breakfast, took my pain meds, hydrated, sat down a lot, etc. I'd list all of my swollen body parts, but it'd just be easier to tell you that it was almost all of it. I washed my hair out last night, but the hairspray turns the whole tub brown, so I didn't soak in the bath last night either. I didn't have the energy to bleach the tub, wait for the water to get hot again, and then sit in the bath for a while before bed. Sundays are always the best days at the cons, because there isn't as much crowd, and we only go for a few hours. My costume today had cowgirl boots, which are really comfy. As everything comes to an end for the weekend, I regret nothing. I'm glad I went, I'm proud of my costumes, and I had so much fun. I've hardly seen my cosplay partner all year, so it was nice to spend the weekend with her, too. I'm finally soaking in a salt bath as I type this. I'm going to hurt all week, work and school will be a little more difficult than usual, but I'm going to go easy on myself and be careful. This is cosplaying with chronic pain, and the pain doesn't get the last say on this one.
Day 3 costume: Harley-Quinn Dallas Cowboy Cheerleader (my partner is Poison Ivy)
I feel like I should add that there is a medication out there that helps me a lot, but I had to switch insurance, and this particular med only comes in brand-name. My new insurance only covers generic meds, and without insurance, it's like $400/month. My doctor and I are currently trying to find a new medication that helps as much and doesn't cost so much, but it's a difficult task that we've been working at all year and still nothing so far. Three cheers for big pharma, right?
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