You're Cordially Invited to an Ailment Party

RA is a systemic disease. It doesn't favor just a person's joints. It affect hair, skin, nails, and internal organs too. Because of this, a person with RA can experience more than just joint damage. according
to an article on health.com, a person with RA has double the risk for heart attack or stroke than a healthy person the same age. RA is considered as big of a risk factor for heart disease as smoking! Doctors think that the chronic inflammation that comes with having RA is a factor, but some medications that RA patients are given might play a role as well.

Did you know that people with RA are also more likely to get cancer? Again, while it's more likely because of the disease itself, the meds are also more likely to contribute. Chemo drugs are often prescribed for treatment because they can knock the immune system into remission. Actually, quite a few of the medications used to treat RA are meant for other things (the drug I'm on is given to travelers as an anti-malarial, though obviously I get higher doses of it). But back to my point: chemo drugs are known to cause cancer. Chemo, which is used to treat cancer, causes cancer. I'm still trying to wrap my head around that. Non-Hodgkin’s lymphoma has been linked to RA, according to this same health.com, as well as leukemia, some forms of lymphoma, lung cancer, and melanoma.


Autoimmune diseases like to travel in packs too. For example, my mom has both RA and Lupus. I know of other people who have RA and Fibromyalgia. Sometimes people have RA and Multiple Sclerosis.

I could probably write a whole book on all of the medical problems that come with an autoimmune disease, like chronic infections, anemia, depression, lung issues, stomach bleeding, etc. I won't though, because I've made my point already. There are a lot of risk factors, and information on these risk factors is available everywhere on the Internet. Then people wonder why people with RA are paranoid about switching medications, going for routine doctor's visits, and the like. I believe this is good information to have available, definitely. But like I said in an earlier post, it's easy to become overwhelmed and dwell on how negative things can be someday. I have moments when I do that too, as positive as I try to be all of the time. It happens.

Health.com article: http://www.health.com/health/gallery/0,,20485110.html

Meditative Moments

I admit to having a love-hate relationship with technology. Don't get me wrong, in some ways all of these technological advancements are a blessing. I have a wealth of RA information at my fingertips at all times. That numbness and tingling I'm feeling in my fingers? I can find a reason for it on Google. It was an Amazon search that introduced me to my favorite pen, which makes it possible for me to write again. On the days that it hurts too much to type I can just talk to my computer as I would if it was my best friend. My computer in turn will write my 8 page History paper for me. Technology rocks sometimes.

But as much as computers help a person like me to function, there's a dark side. It's easy to become overwhelmed by the plethora of information out there. This isn't helpful for a person has anxiety issues, especially when some health websites can convince you that you stomach ache is a sign of cancer. Social media is distracting and often prevents me from getting any writing done. One of my recent observations is that social media websites often lead people to feel bad about themselves. Admit it- one of your classmates from high school recently posted about a really cool new "grown up" job she just got, and you sat there thinking about how you'll never live up to that, or how you're a failure because you still work at a movie theater sweeping up popcorn.

This weekend I decided to experiment with a technology cleanse, similar to the way those health nuts do colon cleanses every other week. I shut the computer off. Threw the tablet in a drawer. I didn't reach for the TV remote or my iPod. I settled on the couch this armed only with my favorite pen and a notebook. If it had been dark out, I might have gone so far as to attempt to write by candlelight, since that's something I always said I wanted to try.

For once in my life, it was like the clouds had parted to allow a beam of light to hit me. The RA brain fog (which is a real thing!) that perpetually haunts took a back seat to my creativity. I wrote uninhibited, without stopping to check Facebook or to over think my sentences. I didn't stop to delete, rewrite, or censor my ideas. I wrote as fast as my shaky, arthritic hands would allow. Most importantly, I was calm. There was no anxiety to be perfect on the first try. There was no hesitation. There's something meditative about being able to turn off the world and focus on the moment. I was able to relax and just focus on my writing. I didn't have to worry about what was going on around me.

I learned a valuable lesson from shutting off all of my electronics. When a person has RA, they sometimes forget how important it is to take the time to back away from the world and center themselves. The more centered I am, the better I work. That's part of the reason why I put a technology ban in place to write this post. As ironic as this is, I think I'm going to start writing all of my blog posts offline.

An Impractical Phobia

I'm going to open up about something here that I don't normally admit to people: I am absolutely, 100% terrified of, and disgusted by, blood tests and all forms of needles used for medical purposes. Whew.

Okay, now you think I'm the world's biggest crybaby. It's cool, I get it. I don't take offense. You may also be wondering why I specified "needles for medical purposes." Well, that's because anyone who knows me also knows that I at one point had 13 piercings (down to 10 now) and that I also have a very large tattoo on my left foot (which was an excruciating type of pain, I might add). These body modifications did not faze me one bit. My reasoning for this unreasonable logic is that I was voluntarily subjecting myself to that madness for the purpose of art. Blood tests and vaccines are not voluntary. Nor pleasant. Nor artistic.

My fear probably has something to do with the traumatizing blood test I had done at age 12. I guess the lab tech's comment about how her eye doctor had accidentally switched her contact prescription didn't register with my mother. Prior to this debacle, I had no fear of any sort of needle. I suppose multiple stabs, twisting needles and fainting tend to cause irrational fears. For someone like me, a phobia of needles is quite impractical. I have to get blood work done every three months so that my Rheumatologist can track how well my medication is working and make sure my internal organs aren't showing signs of damage. 

This morning I had to get blood work done. The same lab tech takes my blood each time, and he's aware of my fear (probably from all of the sweating and shaking, and probably also from the fact that I refuse to watch). He tries to tease me. "Well Miss Pierce, at least you never have to worry about becoming a heroin addict" or "You better be nice to me, otherwise I'll use a bigger needle." Humor definitely helps calm me down. It also helps to know that he's aware my veins are hard to find, that he could only draw blood from my right arm, and that he needs to use a butterfly needle to do so. That sort of trust will help you conquer phobias.

Since I'll be getting jabbed with a needle every three months until the day I die, I know I eventually need to suck it up and get over my fear completely. Maybe a few more blood tests that go smoothly will help. Today I wasn't shaking as much as usual, and I did attempt to glance down at the blood being drawn. It's a good day and a small victory I'm proud of.

Facebook Downers

In my last post I talked about how I love to find inspirational RA sufferers to connect with. Unfortunately, not everyone agrees with my philosophy that motivation from others will help you cope better. I found that out the hard way. Shortly after my diagnosis, I had this crazy idea that I could find myself a decent support group via Facebook that would help me cope with the early and extremely painful stages of RA while the medication was still trying to kick in and I was extremely depressed by my sudden diagnosis. Wrong. Stupid, in fact. There are a lot of people who don't want help or motivation want to spread their negativity like a virus and use Facebook to to accomplish this scheme.

I joined a group (that shall be left nameless) that offered some pretty helpful tips and tricks for everyday life and posted some really amazing quotes and photos to keep people's spirits up. But it was a bipolar experience. The picture or meme or whatever the owner of the page posted would make me feel amazing. Then my gaze would travel downwards, as tends to happen on Facebook, to the comments section, where everyone and their mother would start bashing the original post. The comments ranged from criticizing the page for posting something unrealistic, to people arguing about who was in more pain that day. And God forbid you were a "positive commenter." No positivity allowed there. If you had the guts to post something upbeat, you knew that you were going to be torn apart and accused of not being in enough pain or understanding "the struggle that we go through everyday."

Needless to say, I wound up "unliking" the page in record time. I know it happens more often than not, but don't understand why people feel the need to remain in a cycle of negative thinking. I totally agree that we all need to vent sometimes. It's not healthy to bottle anything up. But repetitive negative thinking and complaining never makes me feel good. I feel completely helpless and hopeless instead. Maybe this makes me an unsympathetic person. Maybe not. I don't think everyone intentionally sets out to make everyone else miserable by pulling them into the chronic illness abyss, but it makes me angry nonetheless. I get cranky from the pain sometimes too, but there's a fine line between reaching out for help and sucking the life out of the next available victim. These are not the people I want to be surrounded by. I want to make the most of my life, not sit in front of a computer thinking about all of the ways to make some person living across the country's life more difficult.

An Inspirational Athlete

Having RA can be a lonely experience. RA sufferers are a mere 1% of the US population, and we don't exactly congregate on our own little island. Because of that, many of us take to the Internet for support. I'm not sure what I would do without social media, especially on the particularly miserable days where life seems bleak. That's part of the reason why I started blogging about my experiences, and why I spend a lot of time each week reading about other RA patients.
There's a lot of advice out there. Don't run because it'll damage your joints. Just do some light walking. You won't be able to handle intense exercises. Rest a lot. It gives me the impression that people with RA should be lazy, or have no choice but to be lazy. I guess an even worse impression would be that people with RA should just accept that they're not like everyone else and can't accomplish the same things.

Then I somehow found myself reading Angela Durazo's blog, "I Am a Triathlete With RA." The tag line on her blog reads, "I refuse to be a victim," and she definitely isn't. According to the "About Me" section of her blog, Durazo is a model turned triathlete who trains 7 days a week. Her writing chronicles all of her struggles, from finding the right diet to being fitted for a bike that will help keep her pain-free during races. She writes about her agonizing trips to the Emergency Room as well as the physical deformities she's experiencing.

Durazo was pretty much unable to take care of herself when first diagnosed at 20 (which is around the age I got diagnosed). But unlike many (including myself), she didn't let her RA hold her back, because if she did, she probably wouldn't have graced the cover of the last issue of Arthritis Today:

Taken from Durazo's Blog
http://triathleteracingwithra.wordpress.com/

This is the person I strive to be, especially on days when I think I'll never be able to be my old self again. If only we could all have her mentality...

Sincere Thanks to the Conklin Hand Dryers

It's gettin' cold out. As much as I love Autumn for its pumpkin coffee, apple cider doughnuts, and the ability to wear boots at every possible moment, I hate that the temperature is slowly dropping. That means Winter isn't very far behind. I hate the cold weather, since it makes RA symptoms worse. The flares are longer and move severe, and the numbing cold is harder to tolerate. Plus, some people with RA run constant low-grade fevers, which means getting the chills more frequently.

It's definitely the most difficult time of the year to function. The worst part? The cold weather is also right smack in the middle of the school year. Sometimes I wish that my parents took one of the opportunities they were given to move to warmer States.

So, what's a girl to do?

I realized that I needed to be crafty.  Stiffness is always unavoidable during the Winter. I needed a quick solution to unfreeze my hands while on campus, since I don't have the comforts of home. I spend most of my time in Conklin Hall when I'm on campus, since I work there. It dawned on me one day when I was in the bathroom: the hand dryers!

Believe me, I’m not as crazy as this sounds.  Here’s the thing: when you have RA, you’re in pain most of the time.  Even on days when the fatigue doesn’t hit you, you’re bound to have joint pain.  Since being negative and complaining about it usually only makes it worse, at least for me, I try to find other ways to find some temporary relief.  Along with my daily doses of medication, I’ve noticed that heat does wonders for my joints. Hence the hand dryer. On cold days, rainy days, or any other day that I’m flaring, I go into the bathroom at work every so often just to run my hands under the air dryers. I find that it loosens up my joints just enough to make it easier for me to type.  Okay, maybe I am crazy, but I’d rather have people look at me like I’m nuts than not be able to do anything productive all day.

I’m stuck with this disease for the rest of my life.  It’s not going to magically get better one day.  The best approach to finding relief is a proactive one, whether that means holding a hair dryer to your toes or wrapping yourself up in an electric blanket.  Even the most rudimentary methods will help.  Trust me.

A Hairy Dilemma

Recently a friend invited me out for one of our weekly Starbucks runs. Our tradition is to buy our overly priced "handcrafted" coffee beverages and then walk along the waterfront to burn off the high calorie counts while catching up on life. On this particular night, we walked past a group of teenagers loitering around a bench and laughing obnoxiously. They became silent as we neared, and once my friend and I had walked a few feet passed them I heard them whisper, "What a dyke!"

This happens a lot, probably to the point where it shouldn't bother me anymore. I'm sure I give that impression to a lot of people, since I like shaving my parts of my hair off and I'm a tomboy at heart. But no, I'm not gay. It never fails to make me angry, though for more reasons than it would have years ago. These kids were more than likely basing this assumption on the fact that my hair is so short, without ever considering why my hair is short. It's an awful stereotype.

I've always had an interesting relationship with my hair. When I was a  Freshman in high school, I decided I was bored with my current hair style and wanted something more daring. On a whim I cut my extremely thick, shoulder-length hair into a very short pixie. It was different, it was easy to manage, and I loved it. I kept it for the next 5 years.

Then I hit my 20s, and I realized I needed a change again. So I decided to grow my hair out. It was a pain, and it involved a lot of patience, headbands, and bobby pins, but I did it and I really loved having long hair again. The options were endless. Bun? Ponytail? Curly or straight? I could now do whatever I wanted.

But then a new problem arose. My new long and thick hair knotted quite easily. I didn't have the strength in my arms to brush out the knots. Sometimes I couldn't even lift my arms up above my head. That meant asking my mother to brush my hair for me every night after I showered. But then I needed to make sure that it didn't knot again in my sleep, which meant asking my sister to braid it (when Mom and I tried, our braids were an awkward mess because of our lack of dexterity).

I was beginning to get really frustrated. I had waited two years to grow my hair out again. I was supposed to be able to use hair dryers and flat irons (nope, too heavy, at least sometimes) without issue.

I realized I had a battle on my hands: my hair versus my freedom/dignity. Maybe that sounds really dramatic, but bear with me here. For many women, hair is a symbol of beauty and confidence. And here I was, with little confidence in my ability to take care of the messy mop on my head. Which in turn toyed with my self esteem. I didn't feel beautiful anymore because I couldn't even do the simplest of tasks. The hair had to go.

The trip to the hair salon was a bit somber. Mom came with me, and when we pulled up to the building I seriously thought about calling it off and going home. But I knew I had to do it. I had picked out a really cool cut, so at least I had something to look forward to.

And so they chopped it all off. I was back to pixie short. I've since gone even shorter, though I'm due for a haircut as of the writing of this post. I miss the length, but now I have something I can manage on my own. I just wish that I could have cut it just because I wanted to, not out of necessity.

This is one of the reasons why I have a problem with these kids. They'd never make fun of a chemo patient with no hair. At least, I hope they wouldn't. But many women out there are forced to chop off their hair because of illness, and they are forced to deal with being insulted by ignorant people on top of dealing with their own emotional insecurities. It's not fair to them at all. I'm used to this sort of behavior from having short hair most of my adult life, but let's try to help those other women out, okay? If you're one of those people making comments, it won't kill you to keep your mouth shut.

Stressed

We all have had that week. That week when nothing seems to be going right. I'm convinced that we all take turns having it, and mine just happened to be this past one. Why, you ask?

10 page paper. History presentation. Poetry assignments for my portfolio. 1,000 pages of reading (okay, maybe just 100, but it was written in Middle English which makes it feel like 1,000). 30 hour work week. Incompetent people. Sleepless nights. You get the point.

Stress isn't healthy for anyone, and I don't need a medical degree to tell you that. It takes a bigger toll on our bodies than we think. Before getting diagnosed, I ignored my body's warning signs all the time. I would just keep going and going and going until eventually I needed to spend an entire Saturday sleeping to recuperate, or until I got so sick that I was forced to stay in bed. I needed to be Superwoman. I can't do that anymore for a variety of reasons. For one, any type of stress will trigger a painful flareup. It's harder to get stuff done under pressure when you're finding it difficult to move comfortably. But then there's the fatigue, the chest pains, the swollen ankles, and a variety of other not so healthy symptoms. When I'm stressed I also tend to reach for sugar and carbs, both of which trigger inflammation (and weight gain).

Take my advice. Whether you have an autoimmune disease or not, slow down. Don't feel guilty about sitting in front of the TV watching the Home Shopping Network for 3 hours. Or for giving yourself an entire homework-free weekend just to catch up on some crafting (I confess to doing both, with the exception of this blog post).

If having RA has taught me anything, it's that I need to take advantage of "me" time, build my strength up, and just enjoy doing the things I love with the people I love. Life is too short to be stressed out all of the time, and we all absolutely take life for granted. There's always that chance that 20 years from now I won't have use of my hands, or I'll be in a wheelchair. It sucks, but that's my reality. So if I feel like going for a walk or taking an online crafting class instead of going the extra mile with my school work, you can bet I'm going to ignore the homework.