We are ALL the Face of Arthritis

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 !

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