Letter to People Without Chronic Pain

Posted on by Grayson

So I was perusing my RA-related Facebook pages today and found this post in one of the discussion boards. I think that it’s a pretty accurate description of how it is to try and explain RA to a ‘normal’ person.

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those who think they know, many are actually misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me….

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me–stuck inside this body. I still worry about school, family, my friends, and most of the time, I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “but you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being social” and so on….it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise or “do something to get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain that you could ever imagine.

Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means I have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is a worldwide network (both on and off the internet) between people with chronic pain. If something worked, we would know. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all of the time, I know that I am doing my best to cope with this and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways, I depend on you – people who are not sick. I need you to visit me when I am too sick to go out…Sometimes I need your help with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you and I do thank you for listening, it really does mean a lot.

 

UGH

Posted on by Grayson

I am so frustrated with so many things right now that I really feel like ranting to someone, and no one willing to listen is around right now, so you get stuck with it.

My family is pretty dysfunctional and it’s really difficult to live with them, especially after basically living on my own for the last two years. I’m not going to really go into it, but it’s hard to co-exist with people who either think you’re the coolest thing ever, or hate you (for whatever reason). I can’t seem to say anything right to anyone, so I just keep my mouth shut. What’s the point, right?
It’s hard getting up so early in the morning to work. I work 7-3 tomorrow in Madison, which means I have to leave my house by 6am at the latest… Making it so I have to wake up by like 5am. It’s a job where I’m doing stuff that I really enjoy, and once I’m done with training I’ll have downtime for homework. But it also requires that I’m on my feet eight hours a day with really no breaks. I’m so exhausted right now. I was thinking about working a second job, but with how early I may have to get up and how late I may have to stay – and already having problems with the one job and being on my feet – I really don’t think it’s a good idea now. Not like it would’ve been that much money anyways – 10-15 hours a week at $8 an hour. I’ll have a second job in the fall on-campus anyhow.
I still don’t know whether or not I’m getting the fellowship I applied for in FEBRUARY because the department is waiting on verification from the US Department of Education before they’re letting us know whether or not we’re getting money. This is something that I really need. I really don’t want to use pure loans for my master’s. It’s so much money, and I’m going to have to pay all that back, along with undergraduate loans… Maybe school was a bad idea… though it does delay my undergrad loans.
I’m apartment hunting for the fall (August really) and not finding the right place. I’ve never lived in a real apartment before, so looking at all this stuff is making my head spin. I have to save up for the security deposit, rent, utilities (depending)… and on top of that, books and such for the fall. I’ll have a roommate, so that will be good, but she’s out of town right now… So that doesn’t help much.
And, on top of everything else, I feel so sick to my stomach. It’s like there’s nothing I can do to get any relief. I feel so hungry, but it’s not hunger. My arthritis, Arthur, is a bastard, plain and simple. I’m not getting as many zaps throughout my body, and my shoulders aren’t as bad as they were about a month ago, but my knees, hips, and feet hurt so bad. It’s so difficult to not let my pain influence how I treat, interact, and reach out to people. The only person that I seem to not usually have that problem with is my boyfriend, and I don’t understand why. Maybe it’s because of the way that he acts and how he handles both me and the arthritis. Maybe it’s just because I’m a silly girl. Who knows.
All I know is that this feels like it could be my theme song right now (again). Everything will work out though, right? Maybe?

Baseball and JRA

Posted on by Grayson

They’re not normally things you would associate with one another. Almost unequivocally, those with JRA do not have the ability to participate in such physical activities. We get really tired really easily, and nothing seems to help. Nonetheless, one of my favorite things to do is watch baseball and, when I can, play catch. I actually write for a baseball blog that follows the Milwaukee Brewers, and get to do fun stuff like interview draft picks. [Shameless plug – my interview with the Brewers number one draft pick will be up on Brew Crew Ball today at 1pm CT]

I’m not going to lie, I totally cried when I saw this. When I was finally diagnosed with JRA, there were maybe five websites talking about it. Now there are hundreds, and more people are becoming aware of the problems that kids face with this disease.
Justin Morneau is the first baseman for the Minnesota Twins. His niece, Madelyn, was diagnosed with JRA a few years ago. Sunday night, the Twins hosted their second annual ‘Justin Morneau’s Casino Night’ to raise money for JRA research and more. For the full story, head over to the Twins’ news page. Pictures from the event are here.
If more major athletes or celebrities were to make arthritis their ’cause’ and be very open and public about it, more people would hear about the pain and be willing to help. The more help the researchers get, the faster they can develop better medicines and, who knows, maybe one day a cure.

Army Discrimination

Posted on by Grayson

Some days I’m unsure what to write about, so I do searches for terms like ‘rheumatoid arthritis’ and ‘medical studies.’ Today, I ran across an article about my home state, Oregon, and the problems facing a woman with RA in the armed forces.

A 39-year-old mother of four, who was being dismissed from the National Guard on account of her very aggressive RA, is now confined to barracks. This woman, who in the past has had to be in a wheelchair and could no longer work, is now alone, not being able to see her family, because of her disease – or her method of treatment.
Richelle Golden was on many pain medications and still feeling sick and hurting. Her doctor suggested she try medical marijuana – perfectly legal in Oregon. Since she was being dismissed from the NG, she saw no problem with it. Instead of being at home and being able to rest, she is sleeping on a hard bed, in what must be a cold room, with really no assistance at all.
It’s sad to see someone facing such discrimination because of medicine they were rightly and legally prescribed by their doctor. And now the NG is placing her in harm’s way, by having altered her medications and forcing her into an environment that adds stress and pain into an already difficult life.
This medicine can be so useful. For those suffering from eating problems, pot can assist them to regain their appetites (yep, the munchies at their finest). It can help ease pain, but it can also help to relax someone’s mind from all the what-ifs they face. I’m not speaking from experience, because I have not ever smoked pot. Like many others whom this drug would help, I worry about the backlash I might face from the people around me, especially since I do not live in a state where medical marijuana is legal.
I always thought that, if medical marijuana was made legal in Wisconsin (or if I moved back to Oregon or any other legal state), I would partake. It would be nice to find a medicine that is more natural than others that have such terrible side effects. However, hearing of the problems faced by Golden and others – from losing jobs to losing state support, despite the medical legality of the drug – I now believe that I would not try the drug. Until some of the stigma surrounding medical marijuana ceases to exist, those who have to use it will face discrimination and persecution.
I just find it sad that Golden is not only being punished for her marijuana use, but also for a disease that in and of itself is one of the worst kinds of punishment. I would not wish the pain that I, my sister, my cousin, or anyone else with this disease has had to endure on my worst enemy.
For more on the story, click here.

News on RA

Posted on by Grayson

Unfortunately, it seems as though the number of RA cases in women have risen. Women are generally more prone to developing RA than men, although there is really no known reason. Within the story featured on Arthritis Today, doctors are grasping at straws and tying this increase to environmental factors such as smoking, vitamin D deficiency, and birth control.

Now for the good news: A new shot developed could potentially cure arthritis. The drug has only been used on mice, and has only been shown to stop arthritis right as it’s beginning. For the mice already affect by RA, it only has slowed the progression of the disease. Still, with a little more research, there’s hope. There’s at least the possibility that, by the time I have children, everyone will be vaccinated against RA.

My Favorite Things About RA

Posted on by Grayson

Yeah, it doesn’t seem like a possibility, right? I hate this disease with everything I am, every fiber of my being. It’s ruined days, caused sleepless nights, and forced me to miss out on so much. It wasn’t until reading this post by RA Guy that I really started thinking about the positive sides of my RA.

Stubbornness
I really try to push through everything. I don’t like when things hold me back. Clearly, I’ve had enough experience with pain doing that. This could be seen as a downside, especially when it comes to resting and such…
Slowing down
l am really not good at this. I pretend like I am, but I’m not. Often, when we’re out and about, I don’t even think about sitting down or resting until my boyfriend suggests it – and then I’m really happy that he did.
My RA has also helped me to want to experience the most precious moments in life more. It’s important to me to be there for the people I love and care about. It’s important to spend time with them because you might not know when you won’t get to anymore. You can take that as morbidly as you like, but I mean more in the flare-ups-causing-problems sense.
Empathy and understanding
I really try very hard to understand the problems that other people face. I can empathize with people who can’t go out and do much, because I am that person sometimes. When I was eight, I was really worried that I would quickly end up in a wheelchair. A few of the places we’d done research about RA at suggested that most children end up in a wheelchair well before eight years. As a result, I always try to help people who are in wheelchairs when I see them.
Medical knowledge
At an early age, I had to learn big words and complicated terms. I may not be a doctor, but thanks to all the reading I’ve done on RA, I’ve been able to learn a lot of medical terminology and the symptoms of different ailments.
Alternative lifestyle
I’m not really a religious person. The one religion that I really just love, and do follow to a degree, is Buddhism. It’s more of a philosophy than a religion. Meditation and other techniques stemming from this and other Eastern religions have aided me in dealing with pain – and given me a career path. I recently graduated with my BA in religious studies, with a double minor in history and politics. I wouldn’t have changed to that major without taking a class on Asian religions to learn more about the meditation techniques practiced in Buddhism.
So as much as I don’t want to admit it, I’d be lost without my RA.
It could totally go away though, and I could just be grateful for all that it’s done for me up to this point. But that won’t happen. And I’ll continue to complain about my RA, but you and I can just remember this post and think about all the good that comes out of a bad thing.

Plaquenil

Posted on by Grayson

I had asked about it a few months ago after a visit with my rheumy. In the interim, I’ve found out that my great uncle’s oldest daughter (first cousin once removed?) was diagnosed with RA not too long ago. I also found out that she’s on Plaquenil and so sick from it that the aggressive arthritis might be better… Not very good for a stay-at-home mom of four.

Needless to say, I probably won’t be taking Plaquenil. It also has sulfides in it, which no one in m family tends to handle very well… especially my mom. And lucky for me, I’ve got most of her allergies.
At this point though, I’m already sick to my stomach non-stop, so what’s the harm, right? The thing is, if I feel like laying around and not doing anything now, what’s going to happen if I take that?
I have like zero energy right now. I’ve had this terrible pain in both of my arms, all the way up through my neck and even sometimes into my head. Over the past couple of days, I’ve also had problems with my chest hurting… and zapping pains… and no appetite.
Awesome.

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!

Are You Hungry?

Posted on by Grayson
I’ve been going through one of those periods of time lately where I’m not really all that hungry. It’s really frustrating, especially being hypoglycemic. I have to eat every so often, or I get grumpy. I also tend to get worried about the struggle I have with the eating disorder that mostly developed in my first year of high school. It really makes me worry whether or not my lack of appetite is due to my RA, which has been known to happen.

Rash: after my post yesterday, I noticed that my knees had some pretty bad rash

Pain: jaw again, stupid wisdom teeth coming in
Inflammation: a little in my jaw
Meds: I took three ibuprofen last night before bed, but they’ve definitely worn off by now, haha
Stress level: right now it’s not bad-ish
Other notes: I’m getting super excited for my trip!!
Things to make you smile: Umm, you need to watch this show because it’s hilarious