Archive for category Uncategorized
Here’s a challenge: love your body.
I mean it. Dance in front of a mirror and tell yourself your beautiful.
Love your tall, your short, your skinny, your fat. Love your freckles, your dimples, your birth marks. Love your hips, your boobs, your butt.
Love your joints that don’t quite straighten. Love your rheumatoid nodules. Love your body’s quirks and imperfections.
I mean, why not?
Next time you catch yourself “if only-ing” about your body…. If only my eyes were blue. If only I lost 10 pounds. If only my face was perfectly symmetrical. And I was taller, thinner. And I could run without sweating. And eat without gaining weight. And stand on the beach as though salt water were a hair product.
Breathe. Love. Embrace.
I’m a strange girl. I like fashion and whatever, but I’m fascinated by genetics, biology, weather, and astronomy.
Throw a chronic illness into the mix and I find myself researching lab mice in my spare time. Go figure.
Anyway, my family knows I’m a bit odd, but my request for a genetic test for Christmas was met with uncomfortable silence. My sister laughed and my mom told me that sounded a bit too personal. That if something came back that I didn’t want to hear, she wouldn’t want to be the one to have gotten me the gift.
I totally understand that. So today, I finally bought myself my Christmas present: a genetic test from 23andMe.
I literally had butterflies of excitement filling out the order form. I think it’s so cool that biotech has entered the realm of personal DNA testing. And that I can get it for $99… Wow.
Not only that, but I like how 23andMe supports scientific/medical research. You can join the 23 and We community and agree to lend your anonymous genetic test results and survey results to studies. I think that’s awesome. I think that the more data points we have, the more trends we can discover. The more trends, the more hypotheses and tests that can take place. More tests, hopefully means better answers, better drugs, and more hope for patients.
I have to wait about a week to get the test tube, then about four weeks to get results. I’m excited to let you guys know what I learn!
Side note: when I Googled “DNA testing for Christmas”, Justin Bieber’s image was everywhere. Weird.
Well I looked my demons in the eye, laid bare my chest, said do your best, destroy me.
See I’ve been to hell and back so many times, I must admit, you kind of bore me.
-Ray LaMontagne, from Empty
This is how I felt after a pretty rough morning – couldn’t open my mouthwash because of stiff, sore hands and my walk went really slowly. It all left me feeling like, Really? This again?
I thought you all were more than due for an explanation as to why I prefer Rheumatoid Autoimmune Disease to Rheumatoid Arthritis. Everyone with RA can empathize with that awkward moment when you first tell people about your disease. The reactions for me generally vary from “You’re too young to have arthritis.” to “Arthritis isn’t that big of a deal.” to “What’s that?”.
Even the people that are sensitive to the disease or maybe have even heard of it have misconceptions. They don’t know that the disease is systemic, as in effecting more than just the joints. If they do have a concept of RA, they usually immediately jump to the images they’ve seen of deformed hands. “You have that!? But you look fine.”
I don’t need everyone to understand my disease. And I don’t need their sympathy. But I’m a 29-year-old woman and I hate the stigma of the word ‘arthritis.’ Maybe it’s superficial and hyper-sensitive of me. Maybe it’s because I’m still fresh to the world of RA. Whatever it is, I much prefer Rheumatoid Autoimmune Disease.
You say Rheumatoid Arthritis, and people’s minds turn off. “Arthritis. I know what that is. My grandma has it.” You say Rheumatoid Autoimmune Disease and people just might hear you out and take you more seriously.
Also, I think that RAD just generally encompasses the disease that I am experiencing better. It’s not just the joints. On many bad days, the joints are the least of my concerns. It’s the fatigue and insomnia and even GI problems. It’s the full systemic issues of RA that make it so complex and difficult to deal with.
So there you go. I know they’re just words and, ask anyone, I normally hate arguing semantics, but this one has pushed a button.
Oh, and RAD just reminds me of neon and the ’80s, and that makes me smile. What disease name can do that?
In the last post I said I’d become a stabbing pro. I may have exaggerated a bit, but I will say that it has gotten much easier. It still hurts and it’s still not fun, but I don’t have to give myself a five minute pep talk before injecting myself anymore. I don’t have to countdown from 10, just to start the countdown again (it only takes the one countdown). I just take a deep breath, breathe out and press the blue top of the injection pen, count to 15 as the medicine flows in and I hear the second click and, walla!
I will share a few slight incidents in the Enbrel Chronicles however.
First up, traveling with Enbrel.
My third shot would find me on a trip to Costa Rica, which meant traveling with a medicine that had to be refrigerated but couldn’t be frozen. I packed it in my backpack with the Enbrel travel ice pack and a larger ice pack. This actually stayed cold enough to make it through six hours on a plane and five hours in a car.
I lucked out, because in Costa Rica I had a fridge in my room. When we arrived the room wasn’t ready, so the very, very nice woman at Hotel Luna Lleyna in Playa Tamarindo (I highly recommend this place, but that probably belongs on a different blog) stuck my medication in the beer fridge. When the power randomly went out for a day, she filled a big container with ice to keep the medication cold.
All of this refrigeration was a bit of a pain, but dealable. Laughably, when I finally gave myself the injection, I didn’t let it warm up enough – it didn’t quite make it to room temperature – and the shot hurt quite a bit and left a bruise that lasted for the rest of the trip. I won’t make that mistake again!
Second, the glitchy blue button…
I was feeling confident about my injection after Costa Rica. I had done this a few times. It hurt, but it wasn’t that bad. I also now knew to make absolutely sure it was at room temperature, so I let the pen warm for 35 minutes before sitting down to give myself the injection. I did my little internal pep talk (not the five minute version, the 30-second elevator pitch version) and my countdown and pressed the blue top, nothing. I adjusted the pen, did the countdown, and pressed again, still nothing. I did another countdown, changed my finger placement and pressed again, nothing.
I began randomly pushing it from every angle, nothing, nothing, then randomly CLICK! I think I visibly jumped, but did manage to hold the pressure to my leg.
Not sure why it was so glitchy, but some of the medication definitely ended up on my thigh rather than in it.
Finally, a weird injection site welt.
After the startling injection the week before, I was a bit nervous, but this injection turned out to be easy and pain free. I was relieved. I felt I was finally making headway.
Then, about 12 hours later, while at work I may add, my thigh started itching. I was wearing a skirt, so I scratched and was appalled to find an orange-sized welt at the injection site. I Googled it and found it was relatively common, so I refrained from freaking out.
I used hydro-cortisone cream and the welt eventually turned to a bump and eventually faded (it took about 24 hours for it to disappear). I’m hoping that was a one time thing, but I’ll keep you updated.
Alright, I have to admit I’ve been a bit of a slacker at updating this blog in real time. By now, I’ve (almost) become a pro at injecting myself with Enbrel, but I wanted to share my experience of my first injection.
OK, so first the good news. After some runaround with my insurance (and contemplating the worst case scenario of having to move back home because of expensive drugs), I got approved for Enbrel at only $30 per month. I was thrilled. I immediately filled my prescription.
Now the not so fun part… I went to the nurse to learn how to inject myself. I was nervous. I hate needles. In fact, one time, when my little sister was about 7 and I was 16, the nurse had me get my flu shot first to show her how “easy” it was. I nearly fainted. (Embarrassing, I know.)
Anyway, the nurse was very sweet. She sat with me and gave me all the information – the injection sites (I’ll go for the thigh, thank you very much, the stomach still freaks me out), warming the Enbrel to room temperature, possible problems and side effects (that part was scary). Then she informed me that I would be giving myself my first injection.
I went a little pale. Yes, I know I was there to learn how to do it, but I thought she would just tell me and then give me the shot. After all, it was my first one! But no, the nurse kindly informed me that “it doesn’t matter how long it takes – and there are no cameras in the room, so if I want to cry, I can cry – but I wouldn’t be leaving without giving myself a shot.”
I gulped. We practiced with a needleless pen. The thing I had the most trouble with was applying the right amount of pressure and not getting startled by the “click” noise. Finally, I felt I was ready (mind you, this was about an hour later). I got the pen ready, held with one hand perpendicular to my thigh, the pressure making the blue tip disappear into my skin. Then with the other hand I pulled the trigger (OK, that’s a little dramatic, I just pressed the blue button). I heard the click, counted to 15, and watched the blue replace the clear liquid in the pen’s window. Then I released, my first shot over, a spot of blood on my thigh.
Yes, it hurt. Yes, it was gross. Yes, I was a bit shaky and white. But I was elated and proud. I had “graduated” from stab school. I had conquered my fear. And hopefully this was the beginning of beating my RA into remission.
Despite not looking like I have a “disease”, RA has certainly done a number on my self esteem. It’s something about knowing that there’s something wrong with you. It’s something about being so hyperaware of your body and all its flaws.
Anyway, given that, I really enjoyed this article: http://www.islandmeetscity.com/2012/01/feel-beautiful-autoimmune-condition/ Hope you do too!
It’s amazing the pain you can tolerate when you think you’re fine. Once my wrists felt better, I simply ignored them. Occasionally they would feel sore, but it wasn’t too bad, it wasn’t waking me up at night.
Needless to say, I didn’t remain pain free for long. I began feeling pain in my feet. The bottom of my feet would just be sore. I blamed this on bad shoes (I’m cheap AND I like heals, a deadly combo!) and working out. It wasn’t so bad anyway. Plus, I was planning a mega-vacation to Europe, so I was blissfully distracted.Looking back now, I’d say I had a major flare up during my first week in Europe. At the time, I thought I was walking too much and had brought the wrong shoes. Looking back, I can feel more empathetic and forgiving toward myself about how painful it was to walk around. At the time, I bought gel inserts and foot cream and told myself to “suck it up.”
I spent a week walking around with painful, swollen feet. The days we walked a lot were bad. I had to take breaks, which was so unlike me that I would beat myself up over it. Every chair or bench I saw, I’d take a break (the museums in Russia are huge-I thought I’d never make it through the Hermitage!). The days we were off our feet, I felt much better. Luckily, I was distracted by Russia, with all its charm and beauty. And, mysteriously, by the second day in Greece, my feet were much better. I felt normal (of course, I was rapidly developing a new pain threshold and standard of normal).I got back from Turkey rejuvenated, energetic and ready to start training for a half marathon.