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Autoimmune diseases bring a whole different set of problems. There's no reason to try and deal alone. Why not be in it together?
We would LOVE to feature your stories and opinions- email us at contribute@thefaceofarthritis.com !

Friday, December 26, 2014

I went for a run

I actually went out and exercised.  I know, amazing, me actually doing something I'm supposed to do to help my body.
Just thought I'd share because, well, I have to share something with y'all.

Wednesday, December 10, 2014

I'm (trying to be) Back Baby!!!!

So much has been happeing over the past few months and I appear to have gone back into full introvert mode as a result.  But i am finally starting to get my body under control, and with that I am beginning to feel more like being my creative, obnoxious self.  In that vein, I'm also going to be starting a Twitter account for the random thoughts I have throughout the day.
And of course, I will start taking better care of the Facebook page. 

The cold, miserable winter is the time of year when we need to be able to depend on each other!

Sunday, September 21, 2014

Radio Silence

Once again, I find myself too quiet on here.  A blog that is supposed to help me cope with the ups and downs- although I need more help with the downs than the ups.  And yet, after a bout of sickness (how can I throw up so much without losing any weight??) and trying a new doctor, a new pain management plan, a new outlook, and instead of reaching out, asking for  advise or commiseration I holed up at home with my heat blanket.  Why?  I've read 3 books since my last post.

I don't know the answer, but I wanted to let you all know I haven't forgotten about this place.  I just haven't had the energy to be witty or readable.

Friday, August 22, 2014

Trial and tribulation...

... does  not even begin to describe my journey over the past two weeks with my new medication;  I started my Humira two weeks ago tomorrow on a Saturday morning after the pharmacy had it overnighted to me so I could start it as soon as possible.  This was my first experience with using an injection pen- outside of practicing on fruit with an Epipen: I was more than a little intimidated when it came with a talking training pen.  (OMG no wonder these drugs are so expensive.  The pen spoke more languages than I do.  I mean, that isn't hard, but still.)
Ohhh boy, #selfiesaturday done right.
I initially was kind of excited, the idea of using a new medical instrument peaked my professional interest.  I prepared myself the way I normal do: wiping the day's thigh with an alcohol swab, letting it air dry, pinching at the skin to find a non tender area.  And after the careful prep work with the talking training pen (In my head, her name is Brenda)  I sat down and got set to take my first dose.  I was prepared, as Brenda had made sure I would be, for the loud clunky "click" that the pen would make when I depressed the button.  I paid attention, just like Brenda insisted, to the viewing window to make sure the solution hadn't turned, and to watch the plunger depress so I would know when the injection was complete.  I even started to count to ten, also suggested by Brenda, to make sure I gave the medication enough time to be administered.
Brenda is a bitch who lies by omission.
While I assumed the medication would sting just like other biologics do, Brenda did not mention the pain that would be a sharp instrument being blindly jabbed into my thigh. She did not mention that I would probably not make it to ten because HOLY SHIT THAT HURTS OW.  I hate Brenda.
Your point is moo.
I am very good at giving injections.  I was trained by doctors who give poke needles around the eye ball, which, people get kind of touchy about, what with the vision and all.  And I can give an injection smoothly enough that I only know its happening because I'm watching it happen.  But that THING- that huge, gangly THING basically accosted me instead of just administering medicine.
Whatever.  maybe it gets better over time.  Maybe I was holding it TOO firmly against my thigh.  Who cares though, because it still comes in standard prefilled syringes so the point is moo.  (Just so we're on the same page, I know that isn't actually the saying.  It's a joke.  See attached graphic.)

 And this is in NO WAY meant to undermine the necessity of the self injecting medication pens.  I totally get that in 70 years when my joints have stiffened and possibly warped some, an every day syringe may not be feasible.  In fact, I'm super glad that Big Pharma has taken the initiative to offer arthritis medications this way.  It  is, surprisingly, insightful on their part.
So as the days passed I found myself using less ibuprofen than I had been (ie not maxing out every dose.)  I found myself not taking ANY tramadol.  I found myself having a spontaneous dance party with my dog.  I even did the #ALSicebucketchallenge .  I didn't pay attention to the difficulty breathing because, hey, I have asthma and pollen counts were high.  But after a week and a half I developed a hive on my left hip.  A rather large hive.  And I drew a line around it, as those of us
A full picture would be weird.  But trust me,
that's my whole hip.
prone to bizarre skin things have learned to do.  Within  the hour it was outside the line.  Within another hour I had a new one on the other hip.
Could I have been bitten by a bug on BOTH hips in almost exactly the same place?  Had I developed an allergy to my laundry detergent, the latex in my trusty old underwear, the oatmeal I'd eaten for breakfast?
Duh, no.
When I woke up the next day I had another hive on my right forearm.  All of them super itchy, none of it improved by oral benadryl.  I finally asked a doctor to look at them at work.  Two doctors, one of whom hadn't seen the hives yet, only heard the discussion, told me I was having a reaction to medication and to call my doctor.
And so that brings us to today, which is officially my first day as a former Humira patient.

Funny aside (because the rest of this wasn't fricking hysterical)- I had to tell my doctor's nurse during all of this that I have an appointment next week with another rheumatologist.  She told me the doctor wanted me to come in next week to evaluate a new drug and I was like, "yeah... so, this is awkward...." and explained that I was seeing someone else.  No judgement, which as a medical assistant, I should never have expected in the least; people change doctors all the time for God knows what reason.  But when in your head you are thinking "because you're all incompetent dicks" it's hard to be sure the other person didn't hear you.

Jesus, this was a long post.  I wonder if anyone hung on till the end.  Or maybe you skimmed to this last paragraph, whatevs.  To each his own, you missed out.  What kind of side effects have you guys had?  Was it instantaneous or did it take some time to notice?

Tuesday, August 5, 2014

Pets are good for everybody.

Can animals tell when you're sick?  I think they can.  My dog seems totally able to tell when to take it easy on me.  On my bad days, he stops at the top of the stairs and waits for me before he starts walking down.  Then he waits at the bottom patiently while I catch up (the down is always harder, isn't it?)
I see the difference in how he acts when my husband is holding the leash instead of me.  He runs farther, strains against the leash, chasing every smell, every sound.  There's no difference in the level of happiness, he seems just as content to trot along with me as he is to bound around with my husband.
Whenever I'm sick, like infection/virus kind of sick, my cat will lay right on top of me.  She lays right on my rib cage like she's trying to protect me.  Any time I feel kind of gross and she lays on top of me, I go and check my temperature and sure enough, it'll be up over 100.   So basically, my animals can tell when I'm sick before I can tell that I'm sick.

And people say that animals aren't smart.

Tuesday, July 29, 2014

I bet Charles Lindbergh never got stopped at airport security because of joint braces.

I mean, that might have been because they didn't use metal detectors and full body scanners and the wand things way back when... it might also be because he was the pilot and he was the only one on the plane, and often times he owned it.  Whatever.
That doesn't change the fact that I am not Charles Lindbergh, nor am I a pilot or a plane owner, which means I got to have a fun old pat down after going through the full body scanner.  And, ok, I will take some responsibility for this. 

 See, I had to drive a rented car 2 hours to get to the airport  (did you know they charge HUGE drop off fees if you rent it going one way and for only one day?  Jerks.)  and it is, of course, my right knee that is my worst knee.  So before I left I put on my semi-immobilizer to help with the discomfort of the drive.  If I had been thinking clearly I would have thought about the fact that it has metal in it.  And that the fashionable straight leg jeans of today don't exactly roll up very well.  And that I was going through AIRPORT SECURITY where they get a little particular about long, thin, sharp looking pieces of metal apparently hidden on your body.  My bad.  
My wrist brace set it off too, but that I could easily take off to show them I wasn't hiding Ninja throwing stars (like I'm trustworthy enough to be given Ninja throwing stars) inside it.  But, damned if I couldn't get my pant leg up to show them that, no really, I'm not planning to kill the pilot, I'm just trying to not fall sideways when I walk.  

The woman was super understanding, though, about the fact that even if I had put those pieces of metal in there to try and kill the pilot, I wasn't going to be getting to them without first removing my pants which, it has always been my personal experience, they frown on in the cabin.  Even if the fasten seatbelt sign is off.
No sense of humor, that TSA and Air Marshalls.  

Tuesday, July 22, 2014

Let the Music speak to and for you

My  Body is a Cage

sung by Peter Gabriel 

My body is a cage
That keeps me from dancing with the one I love
But my mind holds the key

My body is a cage
That keeps me from dancing with the one I love
But my mind holds the key

I'm standing on a stage
Of fear and self doubt
It's a hollow play
But they'll clap anyway

My body is a cage
That keeps me from dancing with the one I love
But my mind holds the key

You're standing next to me
My mind holds the key

I'm living in an age
That calls darkness light
Though my language is dead
Still the shapes fill my head

I'm living in an age
Whose name I don't know
Though the fear keeps me moving
Still my heart beats so slow

My body is a cage
That keeps me from dancing with the one I love
But my mind holds the key

You're standing next to me
My mind holds the key
My body is a...

My body is a cage
We take what we're given
Just because you've forgotten
That don't mean you're forgiven

I'm living in an age
That screams my name at night
But when I get to the doorway
There's no one in sight

I'm living in an age
They laugh when I'm dancing with the one I love
But my mind holds the key

You're standing next to me
My mind holds the key

Set my spirit free
Set my spirit free
Set my body free
Set my body free

Set my spirit free
Set my body free

Friday, July 18, 2014

Oh Hell, I Had to Go and Open My Mouth

You know, sometimes I am such an idiot.  I had been doing well (as far as not catching infections or anything to keep me out of work) since beginning to work in our contact lens department instead of following a doctor around all day.  I hadn't had to call out in several months, hadn't been desperately begging to leave work early because I felt like I was dying from the inside out.
But then, I went and said so out loud.  Earlier this week I made a comment about how well I had been doing.  Which, of course, meant that I would end up puking at work today and being sent home.  I managed to hold it in until after 3, but of course my manager (and one of my good friends, you may recall) has my "I just yakked" face memorized, and immediately hugged me and said "go home."
What the crap, self?  You know better than to say those things out loud, get with it!

Wednesday, July 16, 2014

They just don't make The Help like they used to...

I've been struggling a lot lately with whether to stay with my current rheumatologist or begin looking for someone new.  After a less than stellar appointment yesterday I have heavy heartedly come to the conclusion that it is time to try someone new.
This is a tough choice sometimes.  I've had rheumies that I just flat out didn't like- who made me feel like a private in the army just taking orders from his superior- even though it was my body.  I've had rheumies whom I loved, were personable, got along with me well, seemed to be willing to treat as aggressively as I was comfortable, but had the most shit-tastically run offices I have ever seen.  Now I have one who seems nice enough, and competent,  but rather than treating me as a partner in my treatment is acting more like I'm sitting in the back seat just along for the ride... like, "Ok sure, we'll get pizza for lunch, but first lets run these few errands I have, then we can TOTALLY do what you were just yammering on about."
So, when do you say enough is enough?  It's hard to balance the long periods of time it can take to see improvement with treatment changes, but where is the line that says "waiting is no longer an option"?
Some of you are new to the world of autoimmune disorders and are still trying too navigate the tricky situations that can arise as a result, but I know a lot of you that have years of experience.  Share with us the key signs you look for, or that we should be looking for on first visits to help us determine if a doctor is going to be the right fit.
Choosing a rheumatologist is just like hiring a maid: you don't want to hire a maid where you feel like you have to clean up the house before she gets there.  As one forum member at Arthritis Foundation  pointed out to me, these doctors are your employees and they should be including you as an active, decision making part of the process.
What are your guys' thoughts?
K

Thursday, July 3, 2014

If no one sees your disease, are you like a tree that falls down in the forest?

Did you know there are different kinds of refraction?  The one most people think of- where a lucky tech like me gets to stand there saying "which is better, one or two?" - that's called a subjective refraction, because we rely on the opinion of the patient to determine the prescription.  There are also objective refraction options, or rather, refractions that are based on the physical makeup of your eye, rather than what you think you see.  Few doctors trust these objective methods implicitly because, well, it's YOUR vision, and even if the retinascope says this is what you need, you may not like it.  So, often times, objectives will be used to find a starting point and then the subjective refraction will be done by the tech or doctor to finalize a prescription.

Pain is just like vision: yes, it is something that should have objective indicators which a doctor can monitor.  But, there is also a hugely subjective component that can only be measured and expressed by the patient.  And, just like most people find the which is better test to be stressful (because the B looks better on one, but the N is darker on two, and how am I supposed to know which one I prefer, this is beginning to feel like a life or death decision ohmygod someone please help me I'm DYING!) trying to measure your level of pain becomes one big mind fuck. "My fingers are killing me today, but they don't look swollen.  And my knees won't bend, but there are no pressure systems near me, there aren't even tiny storm cells to watch.  Maybe it's in my head.  Maybe I'm not really sick, I'm just whiny and if I bucked up I would be fine." 

That's the problem with having an invisible disease: yes it's hard to convince others that you are sick, but at one point or another you're going to end up psyching yourself out and feeling like a hypochondriac.  Because, can you REALLY be sick if you don't look sick?

Yes.  The answer, is yes.

Wednesday, June 18, 2014

Change is hard.

There are some little things that no one ever told me would require adaptation. 
They warned me that getting out of bed would be a challenge.
They explained that typing would get more difficult.
I was made fully aware that I had to give up dancing.
I know that my wedding rings won't always fit.
They warned me that walking down stairs would be harder than up.

No one mentioned how it gets harder to be handed your change when you pay in cash. 
Or that it would be tough to hold the steering wheel by the end of my 45 minute commute. 

If anyone had asked, I could have told them I prefer surprises that come in little blue boxes.

Monday, June 16, 2014

Motivation in all the wrong places...

"Look, if you had one shot, or one opportunity to seize everything you ever wanted-  One moment.  Would you capture it, or just let it slip?"

Usually rap is not what I would turn to for emotional support with my disease.  However, I turn there all the time for rhythm support with my workouts, and today I was struck by how profoundly Eminem's intro connected with how I've been living. 
Here's the dealio:  I am lazy, and I love instant gratification.  If I'm thirsty, it is mildly easier to open a can of coke than it is to put water, ice, and lemonade mix into a glass. If I want something sweet, taking a package of Little Debbie cakes out of the cabinet is faster than cutting up strawberries. 
Also, I love cheese.  (That's gonna make more sense in a second.)
So I've known I had RA for 6 years now, and have kinda sorta tried to eat right and exercise.  Except when I'm tired. Or have a bad day. Or when there's cheese.  Or Coca-Cola. I sort of fell off the wagon a lot.
But I decided a while ago to get my ass in gear and take care of my body, even if it wasn't doing a great job of taking care of me (yes, I'm looking at you, immune system.). So I started using an app called Noom, which helps you not only track your exercise and calorie intake, but breaks foods down into green, yellow, and red, forcing you to see that even if you met your caloric intake for the day, it does not mean you made good choices.  It accounts for health problems, and encourages more frequent, smaller bursts of exercise instead of focusing on that one run, or a trip to the gym four days a week.  It's meant to help change your whole mindset about you, your body, your food, and your activities.
And about a month into this, I went for my yearly with my PCP.  That's when I found out I had high cholesterol.  (damnit cheese, stop tasting so good and comforting!) Now I had no choice, there are no longer corners to cut.  The grains must be whole, the sugars must be low, the saturated fats must be minimal, and the trans fats must be non existent.
Which means:  no cheese.  I mean, ok some cheese, but not enough cheese.  No Thomas's everything bagels with chive and onion cream cheese.  (oh wait, would that go under the cheese category?) And, virtually no soda.  My beloved Coca-Cola... Ripped from my non grasping fingers...

BUT
Then I heard this intro to a song while working out, and everything just... Clicked.  The song refers to Eminem's own struggle to reach his goal, but truly, it applies to us all. 
Because our best quality of life is what we have got to focus on seizing! Sure, it might not be great every day, but if we don't put forth effort, it's never going to be great, any day.  Capture this day, seize your healthiest body.
By eating well and exercising, I am keeping from letting my ultimate happiness slip by me.  Eminem managed to put into full perspective the reason it is worth the sacrifice and the hard work if it means that my overall life will be better. It's cliche to say that your body is a temple, but this is -literally- our one shot to "make it". We don't get a second body to try again.
I think he also advocates for heavy drinking and drug use, but I'm not sure that's advise I'm ready to take yet, or give.  I'll get back to you on that when the jury is in.
K

Saturday, June 14, 2014

"One day I'm gonna grow up to be a barometer!"

Ok, none of us ever said that as kids, I'm sure.  But a lot of us definitely do feel the effects of changes in the weather long before the first drop of rain or snow flake falls.  People might think you're crazy when you say "Oh it's gonna rain, I can feel it".  When you're right, they'll attribute it to meteorology forecasts on tv.  But here's an excellent article that explains why chronic pain patients so often become, as one of the docs I work for likes to call me, "the office barometer."
The article will explain that it isn't individual storms or weather events that are causing you problems, this the changes in barometric pressure as fronts move over us that we are feeling.  Here's a website that I check when I'm having a lot of unexplained pain and, behold unto thee, there will be a low pressure system right on top of us.  Checking this every few days can give you a better idea of how your pain is going to be, rather than the standard 5 day forecasts. 
What do you guys think?  Do you notice those changes?  As the article points out, this isn't a proven phenomenon, and just as many patients report no noticeable differences during barometric changes.  Let us know!
K

Tuesday, June 10, 2014

#throwbackthursday

Back in March I made a post about weighing the benefits of treating minor illness versus the complications of repeated exposure to antibiotics.  Today I'd like to go back to the subject of balancing medication with quality of life and life expectancy.
My little toe nail has started turning black.  Not like, dead black... When I danced more I had nails fall off; and not bruising black... I could be a gold medal toe stubber if that ever gets approved as an event (fingers crossed!) Instead, it's started at the nail base and grows out (funny but true, my phone tried to autocorrect that to "gross out", which seems to me to be the same dif.) At my latest visit to my PCP I pointed it out and asked if she had any ideas.  She said it was most likely fungal.
Her: "you can try the OTC creams if you want but... They don't usually work well for a nail bed infection."
Me: "ok, what else can we do?"
Her: "well, I could put you on an antifungal but... Those are really hard on your liver.  And with what you're already on... It would concern me to prescribe that."
I smiled nicely, and asked about other options.  We settled on keeping my nails painted and monitoring for any spread to other tissues.
But inside my heart had fallen out.  That was officially the first time that I could not be treated for something because of the disease or the meds that come with it.  I knew the day would come; I guess I just didn't realize how quickly it would sneak up on me.  Or what a gross way it would do it.
It seems silly now, while I'm writing it out for the world to see, but it completely broke me up.  I was crying when I got home.  I mean, obviously toe fungus is not a big deal, I'm not even new to it.  But being told flat out that treatment was a bad idea... That was such a big milestone. 
I know we've all been told by our docotors that eventually the risks will outweigh the benefits with treatment of acute problems.  But to face the reality for the first time hurt, none the less.

Why is that such a hard step to face? Is it because it's the first thing that really reflects what could be in the future?  For some people, it will never be much more than it is now and I am so so SO happy for those people, and I hope that everyone reading this is in that category.  But we also know that some of us are going to end up on a much harder road in the future.  And since we can never be sure which road has been laid out ahead of us, it is so scary to see those reminders of that shitty one.  

Have you guys had that experience?  Or maybe I'm just overreacting.  Share your experiences with us.  Good, bad, ugly, hilarious.  We need to hear them!

Tuesday, June 3, 2014

Oh the irony

I find it sort of (and by sort of, I mean very) ironic that I started a blog about being sick, but as soon as it gets worse I drop the ball.
Actually, I drop everything.  Pens, pills, a bottle of nail polish remover on my nice black lacquered end table. (ruined, in case you were wondering.)
I was hoping that I would be able to surprise everyone with the astounding news that I was going to be starting an online  Master's degree through University of Tennessee. (I've bled orange since birth.  #VolForLife ) I was going to have to rush to take the GRE, apply, and be accepted all before August.  It was going to be a great tale of perseverance and triumph.  Then I tried studying yesterday and could not focus on anything but my aches, barely able to keep my eyes open even after a nap.  I saw my PCP yesterday as well, and she pointed out that they were probably going to have to change my meds again; that it could make me feel worse before better.  And that's when my stomach dropped and my brain started yelling "do you really want to take out student loans when you can't even drag your butt to the pool to lay around?  If something happens, then what?  You're out thousands of dollars."
And so, instead I am writing about the frustration of having my major life decisions made for me by my body, not me.  When my husband got a job halfway across the country I had to stay for months at home alone until his new insurance kicked in.  I went to an instate college because I would have been uninsurable if I gave up the plan I had from childhood.  Now, my job is evolving around this disease- although don't get me wrong, I understand how lucky I am and am SO GRATEFUL to work for an office that cares enough to help me evolve.  I used to be just a straight up ophthalmic technician, a fancy way of saying "a nurse for an eye surgeon." I scrubbed in on surgeries, got patients ready for their exams, went in with the doctor to assist him.  I adore it.  I would gladly traipse around after a doctor all day, being shown unusual occurrences and learning more about diagnosis and treatment.  But, unfortunately, my body has other plans.  Now I find myself handling the contact lens department, which is new and different and I always like learning new things.  Now I'm helping docs fit state of the art lenses for medical conditions which, is pretty damn cool.  But I didn't really make the choice to switch, my symptoms did it for me.
I think it's finally starting to sink in that I have to change my life to accommodate the different needs presented by these symptoms.  But that is so hard to do when all I want is to be a carefree 28 year old who hangs out by the pool on weekends and goes out for drinks with her co-workers after work.  I don't want to worry about having a cold pack for my Enbrel on vacations, or balance between enough prednisone to calm a flare but so much that my teeth itch and I can't sleep. Or the stress of a backorder injectable that your insurance won't cover a substitute for.  In fact, I wish I knew nothing about how insurance worked. 

I know you guys have had similar experiences- when was the first time you realized you might have to compromise something else for comfort and health?  Change a habit, or give up something you loved? When did it really hit home for you?

K

Saturday, May 17, 2014

Article discussing new steps in treatment options for patients in Colorado

Here's an article talking about an amazing new law being passed that gives terminal patients the right to take experimental treatments.  This could be a great step in getting the FDA and AMA to review their required protocols for medications for those of us falling outside of traditional treatment.

What are your thoughts?  Is this a good step for our country's Big Pharma culture? 

Colorado Becomes First State To Pass "Dallas Buyers Club" Experimental Drug Bill http://bzfd.it/1p0ZD3t

Tuesday, April 29, 2014

Flare or no: do you have any tell tale signs?

So sometimes I can be stupid about my disease.  In fact, I think we all can.  We all learn what our first signs of a flare are, but I'm sure plenty of you, just like I did, try to ignore them and hope that it's something else. 
Mine is that my gums hurt.  They get super sensitive to hot and cold and ache all the time.  And a lot of times the muscles that move my eye (remember I work at an eye doctor's office so I notice every little thing) will become inflamed and hurt to move.  And I know this.  Yet every time I begin to feel those symptoms, I tell myself "its that new whitening toothpaste hurting your gums" or "your eyes must just be dry, don't be paranoid."
And that is always, always, ALWAYS a stupid move.  I know my body, and you know yours.  We should be able to admit to ourselves and call our doctor as soon as something fishy starts happening.  Because, if I had done that, I might have had a week of steroids and been done.  But now I'm looking at upping my MTX dose AND approximately 6 weeks on prednisone. 
The other problem is that, with this being my first spring in the Midwest, I can't help but wonder if it is related to the weather's mood swings instead. 
What are some of your first signs that a flare might be peaking its ugly head?  Do you tend to write it off to other causes or immediately call your doc for advise?  Have you learned over time how to tell the difference between one or the other?

Sunday, April 20, 2014

Breaking into spring

They mowed the lawns of our apartment complex this weekend.  Where just a few weeks ago there were wide never-ending expanses of wheat colored grass, painfully reminding me that winter was holding a monster grip on the Midwest this year; now there are lush green swaths of color, making my heart skip a beat, knowing that my joints are coming out of a season of pain.  Joy at the thought of endless winter fatigue finally being cast out; Spring and summer days spent outside in nature.

Spring is a happy time for most people, but none so much as those in chronic pain; those that have spent months repeating to themselves that it's not forever, just for the season.  The pain will end.  It has to.  And then a freak snowstorm in April makes you want to cry because clearly it is never going to end, this is groundhog day and it will go on forever.  

But now there is a gorgeous emerald sea outside my porch and my heart swells with happiness that I now have several months of relative freedom ahead.  Sure, the changes in the pressure systems, the storm fronts, the occasional pains with no explanation at all; those will always be there.  But I can see a life not ruled by joint swelling and pain.

It's the most beautiful sight in the world.

Thursday, March 27, 2014

#reallybutnotreally

I went to dinner with a friend tonight and we were just chatting about life.  This is a person who is also my manager, and has had to make me leave work sick before (because "supposedly"  throwing up isn't "normal" and doesn't "just happen".) I was telling her about the time I got food poisoning from sushi but tried to go into work anyway, because "you know in the morning you just feel really sick and pukey but it gets better later on in the day?" And she was just like "... no. No, that's not... No."
As if normalcy was relative or something.

Wednesday, March 26, 2014

My tombstone will read "I told you I was sick."

I got sick.  That is such a surprise, isn't it?  I'm sure it was to my family and friends who probably never tire of hearing the words "fever" "pustules" and "antibiotics" after my 28 years on this Earth.
It wasn't any big thing, just a fever with sinus pressure, swollen lymph nodes in the throat, and those beautiful white pustules on my tonsils.  Easy, peasy course of antibiotics to cure strep and sinusitis.  Great.

Image courtesy of Shutterstock
Except that after my 5 day dose pack of azythromycin I still had a sore throat and was having trouble breathing.  I have asthma but my inhaler wasn't helping.  After a sleepless night I called the doctor's office and told them what was happening- no fever at this point.  They called in another antibiotic to kick whatever it was to the curb for good. (I would also like to note that this is the end of March, officially the beginning of spring.  This is my first spring living in the Midwest, which I know means I am being exposed to new allergens my system might not be used to fighting.  I am fully aware that these symptoms could also be just allergy related, which is probably why these questions are swirling around in my head.)

See the thing is, I am treating with a biologic, Enbrel, injected once a week, which- I'm sure many of you know- suppresses the immune system and makes you more susceptible to infections, especially of the respiratory system (I'm guessing because that is what we are most often exposed to in daily life.)  And since I work at a doctor's office, I come into contact with about 30+ strangers per day.
So this second round of antibiotics raises the question very prominently in my head of over exposure to antibiotics in general.  See, here's the thing: I'm only 28.  This is a life long, chronic illness, who's drug therapy usually involves suppressing the immune system.  I have a LOT of years left on this Earth which means a lot of years of immunosuppressants, which means a lot more respiratory infections to look forward to.

Every time I have to take an antibiotic, aren't I bringing myself a step closer to developing A) an intolerance to the drug and B) the likelihood of allowing a resistant strain to take hold in my system?
Do you guys ever worry about this?  What is the long term implication of my being treated for constant systemic infections as a result of my drug therapy?  Do I have to worry about the future, about being a non responder to the commonly used antibiotics?  How do you approach this kind of thing with your doctor?  Do you try to find a happy medium between treatment and deferral?

I'm interested to hear what others have to say about this!  Maybe I'm just over thinking things.  Or, maybe you've addressed this with your doc and have good advise for the rest of us.  Let us hear it!
-K

Saturday, March 15, 2014

Long, hard, night

It is 12:46 AM my time and I can't sleep.  My joints are hurting like crazy, probably because of weather systems but who knows really?
I'm frustrated, and I want to share that before the sleeping medicine I begrudgingly took, finally, kicks in and I can fight my way to sleep.
I was diagnosed in 2008, that's 6 years of treatment with each passing year worse than the one before it. This year I finally pushed to begin a biologic and have been blessed with the results that golfer promised me, to a large degree.  However, 2 weeks after a corticosteroid injection at the doctor (kenalog) I still find myself having gotten 0 sleep this week thanks to pain.  I'm tired of the Xanax, the Ambien, the Tizanidine, and all the other "sleep aids" that put me to sleep most of the time but cannot keep me asleep through the pain. 
I become irritable, and impossible to live with, I am sure.  And even with the huge leap of progress Enbrel gave me, I still find myself miserable most of the time and dosing out prednisone on days I know I need to power through. 
It's a defeatist kind of night for me, but I know that there will be better ones. 

Wednesday, March 5, 2014

I love makeup


 I love makeup.  I mean, if something bad happens during the day, I want to go and buy some nail polish.  If something really good happens, I want a nice $50 eye shadow palette.  Lip gloss can fix about anything.
I am a whore for makeup.
I own basically all of this.
And everything behind the camera guy.
So it becomes rather a point of irritation for me when I wake in the morning- as exhausted as if I had stayed awake to watch the paint dry in our guest room- and have lost the ability to give a fuck about putting on the $20 eyeliner or the $50 eyeshadows.
Same goes for when I wake up with fingers that look like they've been carved out of playdough and I
know that this is not going to be the day I wear eyeliner at all.  Unless the look our office is going for is "Ke$ha: the Next Morning."  I'm almost positive they are not.
So I have ALL      THIS    MAKEUP   and never feel up to using it.  But I want to so badly.  I want to try new styles of eyeshadow.  Different colors.  New highlighters.

But instead I'm sitting there with heat and cold packs on my joints stretching my fingers to try and make them type ready by the time I get to work.

How fair is that?

Saturday, March 1, 2014

The little victories...

May as well be the unending stairs from
Super Mario 64.
... Are what make the world go 'round.  I think plenty of you can relate to this sight: and there are days when you are as intimidated by it as I am.  After a flare, an injury, or just a plain shitty day this is easily the last thing I want to frickin' see when I get home, but until I can afford a personal elevator, or an Acorn chair lift for my apartment complex, I have to deal with it to get to the meds and the bed.  But, it isn't necessarily a bad thing.  I had a rheumatologist tell me that he would like me to live on a second floor for as long as possible because at the least I knew I would get exercise that way.  In other words, even if I feel like hell and can't work out- my joints still get some range of motion practice just getting home from work.  It isn't much, but every little bit helps.
What little bits do you add to your day to keep you in shape?  Do you park farther away, or get off the bus one stop early?

Monday, February 24, 2014

What would it be like...

...if life weren't this interesting?  I slipped at work last week and sprained my ankle (second time in 2014, woo!) and my knee (never occurred to me you could sprain a knee till then.)
If it's not one thing, it's another.  But if it wasn't one thing or another...
That would mean I was dead.
I choose door number 1, thanks.

Tuesday, February 18, 2014

Vince Lombardi

Wise, wonderful football player.  But sometimes we don't all get the better body and the doubtful mind.  My mind often thinks I can do more than my body does.

Monday, February 17, 2014

I Hate Loving My Job

I love my job.  Not many people can say that.  But not many people are willing to focus on the good parts and let the bad roll off of their backs.  I am one of those people, and I have almost always been able to leave work at work when I go home; to give people a new start with every day. Why hold anything against someone? It wastes your energy, not theirs.
Why do I love my job? 
I love having patients above all else.  Taking care of them; sometimes it's hard for them to properly communicate what they want or need to the doctors- that's where I come in.   Being a friendly, consoling face for them if they get bad news.  I am their ally, the interpreter for the patients as the doctors talk to them in what may as well be a foreign language of medical jargon.   I am there as a "real person" you can ask your questions after the doctor has bolted out of the room.  Often times people feel like they cannot have a more laid back talk with the White Coat, or that they will be viewed as "silly" or "stupid" for asking something.  They want someone who appears more on their level to ask these "stupid question."  
I love the doctors I work for.  
In fact, I love them so much that I drive past at least three other Ophthalmic practices in my 45 minute commute.  Most of those are about 5 minutes from my home.   But I do it day after day , dragging my ass out of bed early (lets chat about getting up early with RA later) to join the traffic crawl.
That's how much I love my doctors.  Want to know why that's a bad thing?
I hurt.  I hurt all the time.  I wish I didn't, but I do. I had to stop working Wednesday's because I was getting sick so much, which meant one less day with my favorite doc.  Which also means one full day less of getting paid.  I know that people are jealous when they hear "one day off a week" but they rarely think of the sentence that follows "with one less day's pay."
It would be so much easier to work for one of the bigger practices near my house , where they probably have part time needs, where the commute is shorter, where I don't worry about disappointing the doctors.
But then I would be working in a place that doesn't care about the patients as much and, as a constant patient myself, it is very hard to no be sympathetic and understanding to the person on the other side of the clipboard.  Yes it would be easier on my body, but I would hate what I was doing.
So would that really be easier in the end, or would the stress cause the same symptoms that fatigue is causing now?  How do you balance your health with your integrity to your job?

Friday, January 31, 2014

Good Days Can Suck

Most people don't understand chronic pain, and so sometimes your good days can emotionally feel like the worst.  I mean, the bad days suck, do not get me wrong.  I hate traipsing along after my doctor with my knee in a brace and my ankle wrapped and typing constantly with a sore wrist and swollen fingers.  But, when I'm limping and dropping things then people understand; they can "see" the disease, like having a cough or throwing up.  It validates the state of your being for them.
A good day, though, can make it hard for someone to understand the disease.  "How can you not feel well on Thursday when you felt great on Wednesday?"  "Your joints can't be that bad if they feel good some days.  You must not really be sick, maybe you're just complaining."  "We all have pain."
Sometimes, those of us with chronic pain would love to punch those people in the face.  Even during the worst flare there can be good days: and, just a thought here, maybe the massive doses of prednisone may actually be doing their job and making me not feel like shit. But hey, I'm no doctor. 

At the same time, you have to give the average person a break on this one.  They literally cannot comprehend what chronic pain feels like.  They haven't experienced the ever present fatigue.  The way that the "same" pain feels worse and worse the longer it lasts, just because it never lets up.  That constancy is an alien concept to them.  And often, they don't think about the fact that you don't just hurt during waking hours- it hurts through the night, often keeping some of us up for half the night, making it that much harder to deal with the next day.  For most average people the longest they've been uncomfortable was the time they had the flu, or maybe they tore an ACL playing sports.  Both of those suck, but there's a light at the end of the tunnel.  Often times for us, it can feel like the tunnel will never end.  Or, worse even, we can see the light , but it seems to get father away from us with each passing day; a painful reminder of how little control we have sometimes.

Earlier this week I had a "good day".  I only needed 2 doses of ibuprofen and I didn't need a knee brace.  But I still didn't have time to put on makeup for work, or do anything other than a braid to my hair, because I needed more time to wake up my joints and get started for the day.  That's part of ensuring a good day, giving yourself plenty of time to "prepare." 

Sometimes the face of arthritis has a smile on it because a day with a moderate amount of pain is so much better than a day with severe pain.  

Monday, January 27, 2014

Who is Arthritis?

I work in an ophthalmology practice, and a large portion of our patients are geriatrics; especially when you work with a cataract or glaucoma specialist like I do.  It's hard to walk them back, often slowly, almost hearing their joints creaking.  You hate yourself for your frustration at their slowness, knowing that every second puts you farther behind. The medicine lists they give you to enter are a page long, and seem to be one medicine treating the side effects of another treating the side effects of another and so on and so forth.  

It can be scary for those of us who share the degenerative diseases that plague them.  It feels like looking into the future: watching them try to hold an occluder over one eye, barely able to grasp their own glasses and slide them off.

That's an extreme case, of course, and I see plenty of patients who live fairly normal  lives with the same problems and medications I have, but it's the gnarled fingers and hunched backs that stick out in your mind as a stark reminder of why we endure the sometimes painful and uncomfortable treatments that make up our lives.

My name is Kathleen, I am 28 years old and I have Rheumatoid Arthritis.  The disease has taken a lot away from me, but I hope that I am making progress towards gaining it all back.  This is my life with it, all the little things that come up, the accomplishments, the set backs, the little joys I might not appreciate if I didn't know how much worse things could be from personal experience.  Maybe you can relate- I hope that you will share.  Because I don't just want this to be where I share my story, I want it to be where we share all of our stories- to comfort the new patients, to encourage the old patients, to be a community of life.

I am the face of arthritis.