Long weekends are the best, especially when they involve lounging around the house in pajamas, eating whatever your heart desires, and mountain biking. Sound familiar? I typically jump at any chance to go on a quick trip up to “the city” but decided to go against the grain and stay home. Boy am I glad we did! Not only did I get some much-needed rest, we also went out biking not once but twice! (Insert applause here) I was so stoked enjoying the good (read: dry) weather and doing something physical. So much so that I don’t even mind that I had to spend all evening Monday icing my Achilles’ tendon or tending to a new bruise on my thigh. I love a sport that hurts me so.
The good news is that I am more comfortable on my bike now than a month ago. I take bigger risks, ride further, and feel stronger overall. Sure, I’m limping around like a big baby after the rides, but that’s mostly due to making noob mistakes. Sigh. At least I’m making progress. Also, the boyfriend and I stop and practice log overs (not sure this is the name?). It mostly consists of him going casually over a huge stack of logs and me backing out at the last-minute because I’m terrified. True story. Sad, I know, but sometimes I can’t help it!
We tried to take pics while riding but it’s hard to capture decent photos of us biking using our iPhones, so I don’t have anything worthy of being posted. Plus, someone has the annoying habit of cutting of a certain boyfriend’s head. Ahem. I’m so focused on watching him do a trick, or see how he jumps that I forget I should be focusing on the picture. Sorry! I will try again this weekend. Fingers crossed, it doesn’t rain!
My least favorite season is sadly coming to an end. I know what you’re thinking, how can you dislike the season and yet be saddened by its departure? Easy. While I hate summer because of all the extra steps I have to take to protect myself from the wrath of the sun, it means I get to go out and do things I can’t or won’t do the rest of the year. So with that in mind, let’s get into a recap of what I’ve been up to.
I kicked off the summer with a ride along The Great Allegheny Pass, er, a portion of it. It was a wild and crazy adventure complete with biking through a passing thunderstorm, camping two nights, and the swallowing of many bugs. We did 153 miles in 3 days. It was tough but such an amazing experience.
There are a few reasons I loved this ride so much. For starters, I’ve never done anything like it. Prior to this trip I’d never gone on a ride longer than 20 miles round trip, so this was pretty epic by those standards. Also, I didn’t exactly train for this but that’s because I’m a masochist.
Secondly, the group of people we took the trip with were awesome. They were positive, full of energy, biked circles around me, and lastly were about 20 years older than me. A few of them have kids my age. Needless to say, it was a humbling experience. If I didn’t have them, I wouldn’t have made it. Period.
Would I do it all again? Totally! I love a challenge, but I would probably train the second time around.
Cascade Brewery (and a waterfall or two)
The Pacific Northwest was awesome! Portland in particular. Sure, Portlandia is one of my favorite shows, but did I think I’d find the bliss I experienced only forty-five minutes outside of the city? No. But I did. And I’m grateful. I need PDX in my life, like forever.
Mt. Rainier (in all its glory)
Despite the fact that I threw in the towel about fifteen minutes from Camp Muir, I still made it pretty far. I can’t be disappointed in myself for stopping where I did. In a perfect world, maybe, but given how I felt at the time I did this I am proud of myself. The views were beyond breathtaking. I want to quit my job and move to Washington immediately.
Since I purchased my mountain bike for the epic Allegheny Pass (lots of asphalt), I have been going out once a week away from concrete to get down and dirty on trails it was actually made for. It has been really hard but so rewarding. Mountain biking is dangerous, fun, and makes me feel like I can do anything. I forget about lupus and being sick in general. Simply put, I love it.
Let’s face it, as much as I love being on my bike riding downhill and through streams, or even climbing trails that take me closer and closer to God, it doesn’t mean I can’t also be a city gal. Out of all the cities I’ve traveled to (not a ton) I have loved them all–with the exception of where I live. God knows how I feel about Baltimore, but I digress. Philadelphia is no exception. It delights me in a way I can’t quite describe. The museums, history, and shopping. Even the parks. The city of Brother Love has my heart.
This summer has been filled with the good, bad, and ugly but through the many adventures I found myself in, I had a blast. Besides, my favorite season yet is fast approaching! Autumn, how do I love thee? Let me count the ways. . .
This is overdue, I apologize for the delay. May and June have been busy months for me and after each trip was another activity so it seems everything has collided. Below is my summary from an amazing hike while in the Pacific Northwest. Enjoy!
We started around noon, which was the latest I’ve ever started any hike. This was due to the fact that we left Seattle at 8:00 AM for Mt. Rainier and though only 60 miles or so away, it’s not a fast road and going up the mountain was painfully slow. Anyway, I was comfortable in my nike running tights, worn and used hiking boots, racerback tank, and a sweatshirt. My waterproof shell was packed in the fiance’s backpack. My upf 50 hat is always on my head when hiking to protect me from the sun. We also applied ample sunblock to any exposed skin—I didn’t plan on shedding any of my clothes regardless of the heat. (I have an amazing Columbia long sleeve upf 50 shirt that I always hike, bike, run in but stupidly left at home. Whoops.)
The hike started off with a pretty inclined paved road. The scenery was gorgeous, and the day was clear and warm (around 70 F/20 C). I noticed pretty quickly that my breath was rapid early on. I evened out my pace and continued forward. We climbed, and climbed and climbed. In between the climbing were several water breaks. I started drinking water with the very first step, as I didn’t want to add any stress to my body by being dehydrated.
We passed alpine marmots, eyeing us suspiciously. The views were some of the best I’ve seen, like ever. I never wanted to leave and it helped that it was so beautiful because the hike started to show signs of slowing me down.
Even though we were nearing June we expected and trampled through tons of snow on this hike. Once we near the camp the climbing steepened on the snow fields and I quickly wished I owned waterproof pants or gaiters. We saw loads of people hiking with a snowboard or skis and some even passed us as the gracefully boarded down the mountain. It looked like such fun! About thirty minutes from Camp Muir I started feeling pretty sick. My head was starting to hurt despite having a filling breakfast and energy bar only a few minutes earlier. I knew I was drinking enough water because I had to pee constantly.
I told myself I could do this, and attempted in vain to hype myself as best I could. Before long I realized I just didn’t have it in me—even though quitting is something I just don’t do. I was devastated. As each step became harder I knew I had a decision to make. I made a plan to make it at least to a set of rocks not too far up a hill we were battling. My fiancé decided to push on and I would wait on the rocks. I watched him climb much faster as I fell into the background. I envied him at that moment. Why couldn’t I climb like that? I tried one last time to motivate myself and push forward faster, my body said hell no. After numerous breaks and some prayer I made it to the sanctuary of the rocks.
Once seated comfortably it dawned on me that my feet were finally showing signs of defeat as well. They were wet and numb and my fingers achingly cold. Besides being exhausted I felt dizzy and as though I might vomit. Not a fun feeling but I was so thankful to be on solid ground—even rocky ground—I didn’t care too much about my physical state. I settled into the rocks and after drinking some water decided to have lunch. After my sandwich was devoured I started taking pictures and thinking of the rest of the hike. I stared at the top of the mountain which wasn’t that much higher than me. I felt accomplished rather than defeated. So what I didn’t make it to Camp Muir, I made it pretty close (I later found out from the fiancé ). Why couldn’t I be happy that I made it so far on my own? As I reflected on the art of being thankful for the little things, I was suddenly in a state of euphoria. It was divine.
Fifteen minutes later I saw a figure that looked like my guy and was pretty excited. The break did me good and ultimately I’m glad I listened to my body and stopped when I did. We began our descent down to the hotel and slid (quite literally). I couldn’t believe how fast it was going down. I slid down one huge steep hill and it was so much fun. Then I slid down others not so intentionally but it was still fun. On the way down we saw quite a few alpine marmots and a black fox! The fox was most surprising as they’re usually pretty elusive. He or she was sleeping among the trees curled up, and I think we woke it. The sleepy amber eyes stared at me uninterested.
If you happen to plan a trip to Mt. Rainier let me offer you some advice. Wear suitable clothing! There is a ton of snow and even if it’s not cold starting out unless you have waterproof shoes and gaiters your feet will be absolutely soaked. This wasn’t a deal breaker for us, but it could make the hike miserable for you. You don’t want that. Also, if I ever did this again, I’d bring a sled on my back—a small one. It’s much faster going down. Lastly, pack more energy bars, sandwiches, etc than you think you need. Because you’re climbing the entire way to the camp it’s absolutely exhausting—and calorie zapping! The way down is easier but still tiring. You will want something to replace the energy.
This is such a long post so if you made it to the end kudos to you and thank you for reading! All in all I think it was a success. If you’re interested in our stay (Paradise Inn) just let me know and I’ll post about that–otherwise it’s not that interesting. Stay active my friends!
Did you know that May is the LFA’s* dedicated Lupus Awareness Month (LAM)? As a result, I’ve decided to start a Discover series to spotlight my favorite brands who are also supporters or advocates of lupus. I am a brand loyalist through and through, though I love finding new brands who have beliefs which align with mine. This is not to say the companies must write monthly checks to LFA (or some other lupus non-profit), but if they so much as mention LAM I might be more than simply intrigued.
Stay out of the sun, protect yourself, and love the skin you’re in.
*For more information about lupus, please visit the Lupus Foundation of America’s homepage. www.lupus.org
Children are awesome. They say whatever it is they’re thinking, whether you ask or not, and they’re usually pretty positive overall. So why jade all that positive goodness with talk of chronic illnesses? Because while I may not know everything, I do know that eventually children ask. Simple as that. If you think they won’t, well, then you live in an alternate universe!
All joking aside, it’s something you’re going to have to do at some point so it’s best to be ready. I say this as someone who does not know the meaning of preparation. I typically wing it, because I’ve explained to so many people throughout my life what’s on my face. Hence my blog’s namesake.
When my four-year old niece asked me, I was not ready for how she would react…
We’re laying down on an air mattress because I was able to convince my sister that to let me babysit since I’m never in California. After she discovered the joys of memory foam pillow-top and calmed down a bit we were resting on the heavenly clouds facing each other. I could feel her tiny breath on my face and remember being very sleepy and hoping that if I stopped moving and closed my eyes, she would too. Wrong.
She looked at me and in the most innocent way, asked, “Auntie, what’s that?” while pointing and touching one of my scars. “Aunty has lupus. Lupus is like a cold for the skin. My skin was sick and this is what happened. Now, I have these as reminders, but don’t worry, I am not in any pain.”
This bundle of joy inched even closer to me, and snuggled up. She kissed my face and I stared, dumbfounded. I’ve had cousins tell me, “we think you’re pretty but would be prettier without lupus.” I’m not delusional about how children perceive things. It’s hard to actually put into words the series of mini-actions that took place after I explained to her what lupus is, the best way I thought she could understand. I would be lying if I didn’t say I was surprised, after all these years, after all I’ve been through. The moment we shared was filled with love and understanding. How a four-year old was able to connect with me on a level most adults cannot is beyond my comprehension but I am eternally grateful for her. She’s my sunshine and no disease could ever take that away from me. If anything, I think lupus has actually made us stronger.
Still, while I’m no expert I think if a child asks us a question we should do our best to answer. You might be surprised by how well they handle what you say. It might even make you tear up–like me, cause I’m a huge baby. At some point I’ll have this talk with kids I will hopefully have–I can only hope it goes as smoothly and is as touching as this was.
You know what my favorite thing about summer is? The almost daily occurrence of scattered thunderstorms. I find the roar of thunder chilling. The flash of lightning is beautiful. Most of all, the dark skies allow me to feel less guilty about being outside. I hate that I get it, but I am unable to turn it off. Bright skies? Even fully slathered with sunblock and protective clothing I feel guilty. How can you enjoy life if you’re constantly thinking about what not to do?
While my doctors are amazing and I’m sure they know what they’re talking about, sometimes when one tells me to hide indoors for the duration of my life I stare un-moving for what seems like an eternity. Why would I waste my life away indoors? Everyone will die at some point right? I’d rather live everyday like it’s my last. Inhale the freshly cleaned air while I can. Stare out my rain streaked window while the Gods throw rods at the earth. This is what I live for and this is what I will fight to enjoy. Be it indoors or out.
Don’t let anyone tell you what you can’t have. Sometimes, you just gotta grab life by the horns. Trust me, Lupus can wait.
I recently returned from a week-long cruise filled with sleep, food, and more sleep. Here’s an exchange I had with one of the employees on the ship. Enjoy! 🙂
Jewel (me) To a twenty-something yr old hostess in the restaurant
Hello! Do you think I could get my water bottle filled up before I leave the ship for my day excursion?
Sure, let me get someone for you.
Hostessstares at me with a weird expression
So were you burned or something?
Jewelpaused to quickly determine if I want to give a long or short answer.
No. I have Lupus, which is an autoimmune disease that can damage the skin.
She kinda ignored me after that, which is fine but couldn’t she have done so after I received my water? I waited for the mysterious water person to fill up my bottle for about 3 minutes before taking off and having someone at the bar do it. Now, I’ll probably get some backlash from folks but I’m pretty sure Carnival would not have been happy with her had I decided to complain about her service and rude question. But, I saw no real gain in getting her in trouble so I went on with my day. Hopefully she did too. More importantly, hopefully she learned something.
Because I’ve been getting questions like this all my life, the fact that I’m asked does not bother me. I like questions!! I have no issues with helping people understand all that Lupus entails–even though it’s quite subjective, this disease. The Discoid lesions are not something people see so I expect questions. What usually makes me grind my teeth together is the manner in which people ask me. You can ask a genuine question without trying to guess. Perhaps my scars look like I was burned. Okay, I can live with that. But wouldn’t you feel better if just asked me rather than assume?
What do you think? Do you experience similar situations? How do you handle them?