Category: travel

Struggling

Posted on by Grayson
I’ve been fairly absent from social media and such lately and, honestly, it’s because I’m struggling a lot – physically, emotionally, mentally.
Coming back from Portland was a mess – delayed flights, sleeping in the airport, etc. I became literally exhausted. It was really bad. On top of that, the longest flight (Portland to Chicago) had the heat on like 85 degrees.
I don’t do well with heat, y’all.
My body is so used to the pacific time zone that it’s been an adjustment to try to get back on central time.
Fatigue and pain keep sneaking back in and stealing away moments, hours, days.
My emotions are in a rough spot, too.
Portland was so full of nourishment and love. Wisconsin is… not. Don’t get me wrong – I am loved here and feel nourished, but it is somehow lesser than when I travel. I don’t have people here excited really to see me or learn from me as much.
This is where I come to recharge, but it feels draining to me right now.
Part of it is that the abandonment feels are high lately – something that I haven’t really struggled with during the holidays. Many of the people I’ve been physically close to in the past are all over the world and others just aren’t really there for me right now. It’s hard for me to communicate what I need and I know that’s a big part of it.
It’s messing with my head. I get stuck on thoughts and can’t get them out. I have these imaginary conversations of what I would say to people if I just had the willpower to tell them – ways I need help or they’ve hurt me or any number of things.
How can I be so blunt online but not in my interpersonal relationships?
Growing up in abuse fucks you up for life, friends.
Since the election, I have been doing a lot of emotional work for others – checking in on people and working on ways to add to the resistance against he-who-must-not-be-named.
We need support but also need to take care of us, so right now I’m trying to practice what I preach.
I’ll be around, but I might be slower to respond to things.

 

Packing for trips

Posted on by Grayson
Going on trips can be really awesome as long as you’ve packed in the best way for your illness and the type of type you’re taking.
Planning anything with an illness isn’t easy, but this especially goes for packing for a trip – especially one you go on a plane for.
I have awful luck with checking bags so I try to keep everything to my larger carry-on and my backpack. The amazing packing strategy I have helps:
Take things you can wear multiple times during your trip.
 
I’m not talking about things like underwear that should only be worn a day at a time, I’m talking things like blazers, pants, etc. Bring enough variety, though, that people don’t necessary question that you’re wearing the same thing.
For example, pair your pants with flats one day and boots the next. Bonus points if you go for tall boots that will end up covering some of those pants.
In order for this to work, the clothes you bring really have to be more muted. I likely wouldn’t get away with wearing my red plaid pants two days in a week at a conference, but easy staples like black dress pants or leggings will go far.
If I didn’t sweat so much or like fashion, I might only bring a pair of leggings to NYC!
Alas, I’m cursed with the fashion bug.
Still, other things pop up. We get concerned about what illness-related tools we should bring.
How much K-Tape do I need? Is there room for my Biofreeze and my makeup in my liquids baggie? I’ve had good days lately, but what about bringing my fold-up cane? NYC is a lot of walking.
The best thing to remember is to take things you may not be able to pick up in a store on your trip. Biofreeze comes with me in all cases because I’ve only seen it online. K-Tape can be found at many places like Target. My badass House cane? We’ll see how I feel.
Do you have any packing tips for trips?

 

Arthur and Body Image

Posted on by Grayson

I wanted to talk a little bit more about being in the Dells last week. We basically spent all day in the water – between a few slides, the lazy River of Troy, the two wave pools, and our jacuzzi tub.

Last year, when we went to Noah’s Ark, I wore my bikini with some swim shorts, because I wasn’t really that happy about my appearance. I ended up ditching the shorts as we were leaving because they got pretty uncomfortable.
This year, despite the fact that I’m more out of shape than I was last year, I decided to ditch the shorts and just wear the damn bikini. I’ll be honest, I used to judge people who were a little bit heavier and yet still chose to wear the skinnier girl stuff – I used to conform to societal standards of beauty. But as my RA has gotten worse, I’ve realized that it isn’t my place to judge anyone, just like it isn’t their place to judge me. I don’t know their lives, what they’re facing, or the things they’ve been through. They likewise don’t know the problems I face just getting out of bed sometimes.
At first, I will admit, I was a little self-conscious – partially because of the weight, but also because of my VERY pale skin. The RA also makes it so parts of me don’t necessarily look as good. For a while growing up, I hated wearing shorts because of the way my knees look. After a while of walking around though, I noticed a few other brave souls who didn’t give a crap about what anyone else thought about them. It helped give me more confidence. I suddenly stopped caring what other people thought of me and started focusing on really having fun.
It was the most fun I’ve had while flaring… Well, probably ever. Being in the water, there was less pressure on my joints. Even being out of the water, the sun helped to loosen them up a little. And on top of that, I felt amazing and happy. On top of that, it was a great way to celebrate the boyfriend’s birthday.

Zoltar!

Posted on by Grayson

So the boyfriend and I took a fun little trip out to the Wisconsin Dells for his birthday this week. We went up on Thursday and stayed the night at Mt Olympus. It was nice to hang out in the water for a while. We also had a jacuzzi in our room, and that was so nice.

I don’t know how many people have seen the movie Big, but they had a Zoltar machine inside Mt Olympus. In the movie, the kid makes a wish to be bigger as he gets his fortune read by this machine. Zoltar apparently works some crazy magic, and the kid wakes up the next day in a grown-up body.

Well, I totally went for the Zoltar machine. It says that I will see better days soon, which is comforting since I’ve been flaring for a pretty good while now… and it also says that I’ll lose my money problems if I’m nice and sincere to others. I gotta be honest, even though Big is a movie, I kinda hoped that, if I made some drastic, life-altering wish, it might come true. But instead, I woke up this morning to pain in my left ankle and knee.

Damn you Zoltar, for not working your magic on me.

I Miss My Vacation

Posted on by Grayson

So I’ve been back from my vacation almost a week. It was so nice to forget about the world for a while – and honestly, for part of it, my rheumatoid arthritis. My RA was not very bad at all during our vacation, considering everything we did.

Day One: Flying from Milwaukee to Minneapolis was easy enough. You hit cruising altitude, stay there like 15 minutes, and then prepare to descend. We were able to switch to an exit row too, which was not only helpful for me, but also for my tall boyfriend. Unfortunately, this was the only time we were able to do so. The next flight, from Minneapolis to Portland, was over three hours long. I wasn’t really in pain, but I was so bored. The flight felt like it took even longer, since I was really excited to be back where I grew up. It had almost seemed like I had left the arthritis back in Wisconsin… which would’ve been a wonderful thing, for sure.
Day Two: This is the day we went hiking to Proxy Falls. We had a late dinner with some friends of mine from high school as well. As I mentioned in the linked post above, after hiking over a mile into the forest to find waterfalls, I really felt like I should have been a lot more tired than I was.
Day Three: We visited with some family and mostly did stuff in the car, like the Cottage Grove Covered Bridges Tour.
Day Four: We went to Wildlife Safari, one of my favorite places in the world. This was a pretty long stay-in-the-car day, as WS is a drive-thru park. We spent that night taking care of my five cousins, all aged eight or younger. Needless to say, I was pretty pooped by the end of the night.
Day Five: I woke up feeling pretty tired, and with a lot of pain in my left knee. We hiked to the top of Spencer’s Butte but that was about all we did that day, because of my knee and how tired I was. We spent the rest of the day spending time with family.
Day Six: We left the comforts of an air mattress on the floor in the middle of the Willamette Valley for the coast and hotels. We (read: the boyfriend) did a fair amount of driving that day, but we broke it up by getting out at different viewpoints along the coast and similar things.
Day Seven: We went to the world’s largest sea cave, also home to a ton of sea lions. We also toured the haunted Heceta Head Lighthouse and hiked from it down to the beach below… and I was wearing flip flops. Honestly, I was a lot less tired than I expected to be once again.
Day Eight: We went to the West Coast Game Park Safari in Bandon, the largest wild animal petting park in America. We got to pet the adorable leopard you see on their home page. It’s a fun place, but not as good as Wildlife Safari. Maybe I’m just biased. We went down the coast and dipped into California before driving back up to Medford. Along the way we ran into the Prehistoric Gardens. It’s a little hokey, but pretty fun nonetheless.
About this time is when my right shoulder started to really bug me, so it was nice that we stayed at a place that had a pool. Also, having been so sick when I was little, I had never learned to swim. The boyfriend fixed that, which was pretty awesome. I’m obviously not a great swimmer, but I feel a little more confident about things.
Day Nine: We stopped at some waterfalls in the morning and did a little hiking before heading to Crater Lake. It’s just so beautiful out there. There isn’t a whole lot to do there in the snowier season. We were really lucky that they opened Discovery Point the day we were there (apparently it usually isn’t open until closer to summer). We drove out to Bend, where we stayed the night in this quiet little hotel and watched Star Trek: The Next Generation. Being a little lazier at the end of the day helped make up for all the hiking we did.
Day Ten: We drove out to Sheep Rock and the Painted Hills, two out of three parts of the John Day Fossil Beds National Monument. It was really cool to learn about the history of the state I grew up in, and to be surrounded by things that were around millions of years ago.
Day Eleven: We went out to the Lava Butte. There is a lot to do there – trails, a visitor’s center, and the actual butte itself. Astronauts trained in the area for moon landings in the 1960s, which in and of itself is pretty cool. We also hiked down a mile into the earth at the Lava River Cave. It’s a classy cave – one that’s not pre-lit for you. We rented a lantern on site and it was really a fun time.
We drove up near Mount Hood, where weather conditions got a little too dangerous to get very close to the mountain unfortunately. We headed into Vancouver, Washington, where we stayed the night. The hotel we stayed at not only had an awesome pool, but also had a great spa.
Day Twelve: It was time to say goodbye to the Northwest. We headed into Portland and waited for our flight out. Again, the flight between Portland and Minneapolis was terrible. Sadly, I’d slept a good amount the night before, and wasn’t tired enough to sleep mid-flight. To make matters worse, they decided to screen the horrible movie Dear John. I spent the time watching the movie, without sound, and playing completely inappropriate songs for the scene being shown. For example, the intense tearful goodbye scene was set to Peter Gabriel’s “Sledgehammer.”
By the time we got off that flight, I was in so much pain. I had forgotten to take medicine that morning, which I’m sure made things that much worse. I got some coffee once we got to Minneapolis thinking that the extra boost of caffeine combined with meds might help. It really didn’t. So in the middle of the short flight to Milwaukee, I bought a tiny bottle of red wine. I don’t really drink that much, but that really helped out.
Unfortunately, my arthritis has gotten a little worse since coming back from Oregon. I’m having more pain and a lot more fatigue. I also have very little appetite and keep getting little zaps here and there. It’s really uncomfortable and annoying. I’m sure that if I took more advanced medication than Aleve and Ibuprofen that I wouldn’t have as many of those problems, but I just really hate medicine so much.
I think that I am pretty lucky though, compared to many of the other people who have had arthritis for so long. I’m pretty stubborn, so I try really hard to not let the arthritis ‘beat’ me or push me around. I’m also getting smarter with how I listen to my body though, which I think (and hope) will make a big difference… So will traveling with someone that is really good about taking breaks often.
I am working on posting pictures to my Photobucket account. I only have pictures from day nine on, because I had to dump the previous pictures onto the boyfriend’s computer. If you want to see the pictures I have posted right now, click here, then look to the albums taskbar on the left. I broke the pictures up by what we did that day. They’re also backward from the order in which they were taken. This is part of why I hate Photobucket, but I refuse to pay for more room on Flickr.

Hiking!

Posted on by Grayson

We hiked around yesterday near Sisters, Oregon, called Proxy Falls. I feel like I should be a lot more tired and sore than I am. Maybe it’s because I’m excited and staying in a house full of five adorable children with way too much energy… Or maybe it’s because my arthritis isn’t as bad here as it has been in Wisconsin. It was kind of a tough hike, but definitely super worth it.

Here’s the trail we had to use and all the rocks we had to climb around:



It looked pretty creepy up in the mountains, too:


Also, since we are in Oregon, here’s an obligatory picture of a huge duck!