Thursday, August 30, 2012

I'd Rather Have Blood Drawn Than...

   One thing that I know a lot of newly diagnosed sick kids worry about is getting blood drawn, especially for the first time. I made a list (I've been into lists lately) of things "I'd Rather Have Blood Drawn Than", and maybe it will give a bit of comfort, because they really aren't that bad.
   Blood draws are seriously my favorite part of rheumatology, because I can't think of any other good part. I could not care less about having blood drawn, and I've never worried about it or tensed up right before the needle went it. I just think, Yep, I'm about to feel this needle, while I'm texting with my other hand.
   Oh and while we're on the topic, ask for a butterfly needle. After you get to be a teenager (literally the first time I had blood drawn after I turned 13), they start using straight needles. Straight needles hurt. Butterfly needles don't hurt. Plus, they always say yes, even if they're a little annoyed. Seriously, if you take anything away from this blog post, let it be to ask for a butterfly needle.
   So without further ado, I'd rather have blood drawn than...

  • Rip off a Band-Aid
  • Take a test
  • Go to the state fair*
  • Have a shot or injection
  • Go to the dentist 
  • Touch the tip of a hot glue gun
  • Watch "House Hunters"**
  • Get a paper cut
  • Watch just about any movie 
  • Have water stuck in my ear
  • Make just about any decision 
  • Get stuck on an elevator
  • Have a rheumatology appointment


Love,
Rachel

   *I don't like the state fair. The smell, the crowds, the uncleanliness, the lines, the activities, the dust, and the general obnoxiousness of it all. 
   **"House Hunters" is seriously the only show that I am just completely unable to watch. It's not a simple dislike (in the way the state fair is), it's pure hatred. 

Monday, August 27, 2012

Rheumatology

    I have rheumatology tomorrow.
    Anyone want to speak on dread, or anxiety, or nervousness, or fear? Yeah, I hate these appointments, but they're necessary. The day after is always the worst because he has practically ripped my body apart at that point, and the next day is pretty much an arthritis reunion. All of the different joints that hurt at different times come together and kill me all at the same time. So Wednesday should be lovely. I'm trying to get exempt from my exams this year, too, but I need three or less absences, and that will not click with my arthritis, because I miss a lot of school. That's kind of a bummer, but I still think I'll try. Might as well.
   My joints have been pretty bad lately, so this is one of my more important appointments. And I do realize that this is a boring post, but I've gotten emails questioning my six-day-disappearance, haha.

Love,
Rachel 

Tuesday, August 21, 2012

The Unknown

    When people think of arthritis, they think of joint pain. Rightfully so, if I may add. After all, arthritis literally translates into "joint" (arth) and "inflammation" (itis), and that equals pain. But what most people, even well educated people, don't know is the hidden side of arthritis. I thought I'd speak a little about that today. This post is more aimed towards people who don't have arthritis and could benefit from a better understanding, but also for people who have arthritis and can stand with me and go, "I know, right?"
    Haha, so to the point.
    First of all, let's talk a little about immunosuppressants. If you don't know what an immunosuppressant is, it is a medication that attempts to break down your immune system, which fights off germs and viruses and basically the "bad guys". When someone has an autoimmune disease, their immune system is attacking the wrong thing (in the case of JRA, the joints). To slow the attacking, immunosuppressants are given to weaken the immune system. While it can make autoimmune disease better, we also have less germ-fighting ability.
   Being on two immunosuppressants, I have to constantly sanitize and wash my hands, be careful what I touch, and avoid people who are sick. Petting zoos, hugging a person who's not feeling well, and sharing drinks/food are all off limits. Even if I'm in the petting zoo vicinity and not touching anything, I must still be very careful to wash my hands really well afterwards. If I want to share my food, another person's utensil cannot touch anything that I am going to eat. For example, if I'm having pasta, they either need to get a clean fork or I have to use my fork to put it on their plate. It just goes along with being on immunosuppressants. People on immunosuppressants tend to get sick more easily and get sicker than a normal person would.
   You know, it sounds like I must always be thinking about this, but it's just a way of life now in the same way that being a vegetarian is. I'd rather be safe than be sick.
    Secondly, we shall talk some about medications in general. Let's take two examples: NSAIDs and methotrexate. These are the two most common JA medications, so we'll skip biologics right now and just stick with these. NSAIDs tend to rip the stomach apart when taken consistently for long periods of time. Whenever my stomach hurts, it's usually from NSAIDs. They suck, but they reduce the pain about a one or two points on that 10-point pain scale, so I guess that's worth it. I don't know how many other kids with JA experience this, but I've tried a lot of NSAIDs that gave me severe and annoying ringing in my ears. Meloxicam was the worst about this, but I'm on Naproxen now. I remember one time in sixth grade when I was in science class and it was just awful, the ringing and everything. It was giving me a headache and it was sooooooo loud! I'm so glad I got off that terrible Meloxicam, but if it works for you, so be it. Naproxen seems to be working out alright for me. I still have the ringing, but it's not quite as bad.
    Then there's methotrexate. If you ever find yourself in a scary situation in life, when someone asks you to give an example of a love-hate relationship and you can't think of anything, say methotrexate. Seriously, it's the best example ever. First of all, methotrexate is pretty much the only medication that makes my JRA most of the time livable (which really stinks, since there's a shortage and everything). Let's begin with the injection (some kids take it orally, but most of us get the weekly injection). Injections are not fun. I don't freak out and I don't think they're the worst thing ever, but they're not fun, and that's just that. Then, the next day, I usually feel pretty darn crummy. Some days, I feel like going into Dr. Rheumy's office and screaming that if I am ever prescribed more methotrexate I will run to Antarctica, grab some icebergs, run back, and start destroying things and launching ice chunks at people. Then, on other days, I feel like giving him the biggest hug ever because I know my pain could be a gazillion times worse.
    Third, we have the ever-so-popular fatigue and exhaustion. Fatigue affects a lot of patients with JRA. I don't have fatigue, but I do get exhausted really easily. I use my wheelchair when we're in situations that require prolonged amounts of walking, but if I even get up to walk around a single store, I am extremely exhausted afterwards. The littlest things suck away all my energy. We arthritic people have to use our time wisely. This goes along with the spoon theory (which I'm not a fan of, but I understand).
    Lastly, we'll take a trip down Uveitis Avenue. Uveitis affects an alarming percentage of kids with JA. It can even lead to blindness, which according to Arthritis Today happens in about 45% of cases of uveitis. I don't have uveitis myself, but a lot of my friends from the JA Conference in St. Louis did. Kids diagnosed with JA will usually see an opthamologist once every six months to check for warning signs and symptoms of uveitis. Catching it early can make all the difference.
    I hope this blog post provided some insight on some of the more hidden things that come along with arthritis, and if you can think of any more please leave a comment or email me at thekidwitharthritis@gmail.com!

Love,
Rachel 

Wednesday, August 15, 2012

Heat Patch Fail

   I am ashamed of myself. 
   If you happened to read my last blog post, I mentioned that you should never, EVER, under any circumstance stick a heat patch directly onto your skin, because it WILL burn and I HAVE tried it before. So you'd think that being human and connecting actions to consequences, I wouldn't be stupid enough to do it again. 
   I did it again. 
   Okay, okay, let me explain myself. I usually get my heat patches at REI (link at the end of post), and they're really great, but I was in Las Vegas and headed to Alaska and I didn't have any more. So we bought these things that are supposed to go directly on your skin. I didn't end up wearing them in Alaska, but my back was flaring up today so I decided to try them. I read the instructions. I did what they said. So I get a little credit, right?
   Nope. 
   Because even when I specifically told others and also myself that that is a very poorly thought out idea, I did it. I feel like I do that with many, many things. 
   There I am, sitting on the edge of my bed, sticking a heat patch directly to my skin. It didn't hurt at first, but then I discovered that I could barely bend down without getting it all wrinkled and messed up. Of course, that would be the moment when I needed to change my cute little studs with some awesome Canadian earrings. If there is one thing in this world that I am just pitifully miserable at, it's changing out of studs without dropping the earring or the back. Predictably, I dropped the backs twice and had to get my sister to pick them up. That is a heat patch fail if I've ever seen one. 
   It wasn't very hot at first, just uncomfortable, but then good gracious did that puppy heat up (for readers who translate, ignore the last sentence). All of the sudden, my back was burning hot and I was trying to put up with it. It's one of those decisions where you have to be like, "What's worse, arthritic back pain or the red burn that's about to appear on my back?" Well, I decided that arthritic back pain was worse and put up with it. 
   Then during Youth I was just about scalding my back so I took it off immediately afterwards. My back pain was nearly gone and my back stayed warm for a good hour or longer. I have to say, I'll probably do it again, even though it's a wee bit stupid.

Love,
Rachel 

Tuesday, August 14, 2012

Cold Weather Tips

    Starting in September, it will start to get colder where I live. And I know this post seems out of place, because on my side of the world we're in summer and it's quite hot, but it's best to plan ahead.
    Cold weather is a flare-up trigger for most people with arthritis. To stay healthy (or prevent your arthritis from getting worse) during the fall and winter season, I've created a list of tips. I have personally experimented with all of these suggestions and found them useful. Remember that everyone is different and stay safe!
  1. Heat up your socks with a hairdryer. It sounds stupid, but it will keep your toes, ankles, and feet warm which prevents a flare-up. The same can be done with gloves. The thicker the sock, the longer you should blow-dry it. Make sure the warmth is appropriate and safe before putting them on your feet - they heat up quickly! 
  2. Wear braces on your knees or any other joint. This helps with stabilization and with keeping your knees warm. Don't get ones that prevent too much flexibility, as we don't want to stiffen up! 
  3. Set two alarms - one for thirty minutes before you need to get up and one for the time you need to get up. Have a heated blanket ready. After the first alarm, plug it in and turn it on. Sleep more. Second alarm goes off a wah-lah! Your joints are not quite as stiff! 
  4. Sleep with your socks on. Sounds annoying, is annoying, really works. 
  5. Hot tub time. Okay, so as some of you already know, I absolutely HATE hot tubs. But in the cold weather, they can do a good deal to keep your joints in motion. You don't have to stay in too long for relief. I hate being wet and I hate hot water (I've been known to get cold showers), so this is a tricky one for me. It actually doesn't help very much unless you've just gotten out of the cold, in my opinion. 
  6. Henry to the rescue! Henry = Rachel's beloved heating pad. (Did I seriously just speak in third person? Didn't I learn my lesson about that in geometry?) Anyway, Henry can be extremely beneficial. Opt for him or a heated blanket to help you when you're doing a sitting-still type of job or chilling out or whatever. 
  7. Prepare yourself. Look at the forecast ahead of time. If there is high humidity, a rain shower or storm, or especially cold weather ahead, make sure to follow these tips and any more that you may find very diligently. Arthritis has been known to trap people on-the-spot with flare-ups, including myself. Trust me, it's best not to let it get to that point. 
  8. Get heat patches. I have found these at athletic stores, and you can buy an adhesive kind that will stick to the outside of your clothing. I frequently use them for my back. No one can tell, if you're wearing two layers and you stick it on the first. YOU CANNOT STICK THESE DIRECTLY ONTO YOUR SKIN. I cannot emphasize that enough. I was stupid enough to try it once, and boy did that get painful. 
  9. Keep ibuprofen close at hand. This is a pretty dumb tip, because you should be doing it year-round unless your arthritis is in remission or doing significantly well, but it is extra important in the chilly months. 
  10. If you're waiting, wait inside. There is no point in standing around in the cold, because that will only make your joints worse and you WILL become irritated with every single person in a 3-foot range. 
  11. Don't follow these tips. I know, I know. Right now you're like, "Rachel, what in the world, why would you tell me all of these and then say don't follow them?" Well, that's not actually what I mean. You should follow the tips as much as you can. But don't let them stop you. You can still go outdoors and get cold if you don't have any ibuprofen or heat patches, but you need to understand the consequences. And if you're the type of person who always takes it too far, like I am, then maybe you're best just sticking to the tips. Just don't let them be deciding factors. 
     Sorry that these posts haven't come very frequently lately, we were busy with traveling. If you have any additional tips, comment on this post or email me!
    Also, I've been really behind on email lately, but I'm going to attempt to at least partially catch up. Thanks for being patient with me!

Love,
Rachel

Wednesday, August 1, 2012

Surviving Arthritis - Newly Diagnosed Part 2

Here is the Part 2! For this portion, I tried to focus more on the medical aspect of being newly diagnosed.
Stage One: Do your research. You'll feel much more in control and comfortable if you are knowledgable about your arthritis, specifically your individual type. There are plenty of good resources out there to help you. A lot of times, the pediatric rheumatologist who is treating you will provide information. Another great resource is the Internet, as long as you are finding reliable sources. Education is the first step to control.
Stage Two: Talk to your doctors. Every kid with arthritis has a medical team, often consisting of a pediatric rheumatologist, a physical therapist, a pediatrician, and even a psychologist in some cases. It is important that all of these people stay informed about how you are doing.
Stage Three: Think about your joints. I don't mean just lingering on the fact that they are kind of screwed up. I mean thinking about how different activities in tour everyday life will affect them. For example, we went bowling a few days ago. I have to think about the best way to bowl that will cause my wrists and knees the least amount of pain.
Stage Four: Make sure the people who need to know know. You don't have to share your diagnosis with everyone (though every situation is different), but it is important that your teachers at school and other adults who have responsibility over you for some period of time know. The worst time to be explaining that you have arthritis is when you are close to falling in the hallway or struggling to write on the board. Trust me, you do NOT want to go there. This is medically important because you need to be able to limit yourself and take your medications without being questioned or interrogated by adults.
Stage Five: Know your medications. You never know when you will need this information.
Good luck!

Love,
Rachel