I Miss My Vacation

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.

Disclosure

I always find it hard to figure out who should know about my rheumatoid arthritis. I think the biggest problem is that it is hard to determine who needs to know when you operate disclosure on a need-to-know basis.

My current employer does not know about my condition. Sometimes I wonder if I should let them know. I do have to lift some heavy items sometimes which, when I’m flaring up, can be really difficult. I also don’t want to act like I can’t do my job though.
At my last job, I tried not to tell them either. It became apparent though as I was setting up layouts and straightening throughout the store that they needed to know. I was in pain and needed to take a break more often or do less strenuous work. Nothing really got better for me though, because I did not have insurance until recently, and they demanded a doctor’s note. There were a few choice individuals that would allow me to modify what I was doing and who were very understanding about the problems I was dealing with.
Disclosure becomes more of a problem when it comes to personal relationships.
I have dated people and not shared the fact that I have rheumatoid arthritis with them. My current boyfriend is the only one who I’ve told very early on in the relationship. I’m very lucky that he is very understanding and interested in learning more about what goes on with my body. In fact, it was his idea to begin writing this blog as a way to raise awareness about my RA and explain what difficulties I face.
The blog also serves another purpose. I do not like to feel as though I am being an inconvenience to anyone, especially those I care deeply about. As such, I’m not very likely to tell my family or boyfriend about pain I am having over an extended period of time. The blog serves as a way to update them without having to actually tell them about it. I’m sure that seems weird, but it helps me to cope with the problems.
As far as other relationships go, I tend not to tell others about my condition. My roommate knows, for obvious reasons. Some of my professors know, again because it became necessary to inform them. However, other friends don’t really know. If they do, it’s because I post some information on my Facebook and Twitter pages.
In the future, I hope to be a little more revealing to people I know about my arthritis. I do worry though that I could become one of those people who constantly annoys everyone with stories about their problems.

Who would you be?

I missed the memo about the latest Patients For A Moment series. The topic is something really important to me though – who would you be? Who would I be without RA? What could I do?

When I was younger, it used to seem like a grand notion that brought with it almost superhero powers. To imagine that I could run around and not get terribly fatigued was wonderful. Later on, to imagine that I could live without taking so much medicine or feeling nauseous when I have to was a heavenly thought. I used to imagine that I could go anywhere and do anything. Escaping to that world in my mind was the only way that I felt free.
Maybe I should backtrack. In my last post, I talked about how I never really had the ability to live without the aches and pains associated with RA. I was four or five when I got sick. We didn’t know what I had. For a while, I felt like a lab rat. The people close to me were worried that I was dying. I wasn’t really being able to comprehend what was going on, but I knew that I hurt all over, slept too much, was really tired, and that my momma was crying a lot. I was diagnosed with leukemia and told I had weeks to live and needed to start on chemotherapy right away. Finally my mom – not the doctors – figured out what I really had.
I have scattered memories of my life before RA. Sometimes I wish that I would’ve had more time before the disease to enjoy more things. In the end, I’m glad that I don’t really remember being “normal” because I can’t miss it that much.
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I’m kinda just going to free-write for a few here. Enjoy.
When I was at my rheumy appointment the other day, I had to get a lot of blood drawn so that they could run tests. I almost instantly regretted my choice to make that appointment, because I realized that I forced myself to feel like a lab rat again. Obviously, I needed to go and have these tests run. And then I realized that there really was no need to feel like a lab rat.
Sometimes it’s hard to remember that this disease doesn’t hold me back as much as I do myself… though I don’t really hold myself back from a lot of things. If anything, I push myself too far. I try to ignore my limits and it usually backfires – definitely something I need to work on.