YAWN!

Posted on by Grayson
A cure for arthritis might not be as far away as once thought. A new antibiotic combination has been used to treat people whose arthritis was caused by Chlamydia. For most of us, this isn’t the case. Still, the fact that this drug is really helping people go into complete remission gives me hope for the future.
Also, here’s the story of a brave 13-year-old girl with RA.

Rash: my face, as always – UGH. Makeup doesn’t even help. This is super annoying. I always assume people think there’s something wrong with me or that I’m mad.

Pain: I’m starting to get a headache… and my wrist is still being awkward… and so is my right ankle.
Inflammation: nothing actually seems too bad right now, except the ankle.
Meds: none
Stress level: low
Other notes: I’m ready for the summer, but not for graduation, go figure.
Things to make you smile: one of my favorite websites, ZooBorns

New Shoes!

Posted on by Grayson
Alright, so I’m kind of addicted to shoes that aren’t always the best for someone with RA to want to wear all the time – mostly flip flops and ballet flats… and high heels. When I was in high school, I alternated between wearing flip-flops and high heels every day.
Flip flops are terrible shoes because they don’t provide a lot of support. For someone with RA, this is terrible. You need the right amount of support; otherwise, everything starts to hurt. They’re fine for quick trips places where you aren’t walking a ton though.
I used to love high heels. I’d basically wear a pair until they were beyond done for and then get a completely different pair, with different heights. They helped take the pressure and pain out of my most troubling joints – my knees. They also forced me to slow down my walking pace, resulting in the same effect. Unfortunately, my feet just can’t handle the odd configurations and pressure caused by these shoes anymore.
Ballet flats aren’t too bad. The problem is finding some with adequate cushioning or buying the right kind of inserts. My favorite pair finally had to get tossed yesterday (about two months late). I was able to find, though, two very nice-looking pairs of flats at Sears for a nice low price. Unlike my last pair, both of these have a nice amount of support and cushioning. I’m not even experiencing a difficult time breaking in either of these.

Rash: small amount in the knee region this morning

Pain: headache lasting about two hours
 
Inflammation: able to feel some in the left knee
 
Meds: two Advil for headache
 
Stress level: fantastic, in a non-sarcastic way today even
 
Other notes: it was Jackie Robinson day today so I got really confused watching the Brewers/Cubs game earlier

Maybe a New Format?

Posted on by Grayson


As I’m able to begin posting a little more, I think I may try to do a physical update sometime during the day – if/where rash is present, any noticeable and painful inflammation, etc. So let’s start now!

Rash: right hand between lowest knuckles of the index and middle finger (as seen above); pretty much my whole left arm, from the shoulder down; both cheeks, spreading into the neck region.
Pain: left ankle and knee, but much less noticeable than yesterday; left ear is having pressure problems; right hip; rash stinging pretty bad (esp left arm), except on face – there it’s bringing along a feeling of fever (as usual); left hand – stinging, tingling sensations yesterday after leaving DR’s (no logical reason for it) occasionally hurting again.
Inflammation: left ankle swollen, also less noticeable then yesterday; presume that pressure problems in left ear are related to swelling; slight swelling in lymph nodes on right side of neck – not visible but sensed by touch.
Meds: I have not taken any medication today.
Stress level: don’t even ask, haha.
Other notes: Did not sleep well last night – paper and presentation due this morning. Bound to be similar situation all weekend. Feeling extra nauseous today – prob related to stress, lack of sleep, anxiety.
Things to make you/me smile:
  • It’s baseball season 🙂
  • Almost done with capstone…
  • I graduate in a month
  • Things might get a little worse, but they’re always bound to get better

Rheumy Appointment #2 Results

Posted on by Grayson

My x-rays didn’t show any terrible changes in the bones themselves. My blood tests were normal for someone with RA – high sedimentation rate, high white blood count, etc.

My doctor is suggesting that I begin taking Plaquenil (hydroxychloroquine). It was an anti-malarial drug and then was found to help patients with lupus and RA as well. It’s an immunosuppressant. It’s not a bad idea, because it’s one of the more mild RA medications. It’s a DMARD (disease-modifying antirheumatic drug), but no one is exactly sure how it works for RA and lupus. The side effects seem to be minimal, and pretty similar to the problems my arthritis already causes me – stomach pain, nausea, loss of appetite, headaches, etc. As a 21-year-old, I’m a little saddened at the caution about drinking alcohol and liver problems, but I don’t really drink anyway, haha.
The reviews seem to be really good too. Is anyone else on this medication? Is it working well?

Disclosure

Posted on by Grayson

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.

Blaaah

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One of the hardest things to deal with, no matter what chronic illness you have, is the effect it has on you emotionally. There are a lot of feelings of inferiority, especially if/when your body isn’t working properly at all.

Yesterday at work, I kept dropping everything. The size and weight of the objects didn’t matter. I dropped a stapler, keys, paperwork – you name it, it ended up on the floor. And obviously, the busier it got, the worse it got. Only one person at work knows about my RA, and he wasn’t around. Even then, it’s not like he knows details.
All I could think of last night was being self-conscious. I don’t want to drop everything and then have people treat me like I’m incapable of doing anything. Unfortunately, that’s always something in the back of my head. It doesn’t matter who I’m around either – co-workers, friends, professors, family, my boyfriend – I’m always worried about what I’m doing, what I can do, what I can’t do, and what I’m forcing myself not to do.
I think another part of it is that I don’t like to inconvenience people. I won’t tell you when I’ve been depressed for a week, what set it off, or if you/your actions played a part. I won’t tell you that I can’t do something because of how painful it is – even I’ll only stop once I realize that it’s not happening, no matter what I try… or when I get too frustrated with myself or the situation.
I’ll try to drop subtle hints about things that are wrong because I don’t feel comfortable saying it bluntly. The only problem is that most people tend to not get subtle hints, or I try so hard to make them that people just get annoyed and ignore me/think I’m acting stupid.
I think people, in general, need to be more patient, more attentive, and more willing to talk about things, whether they think it’s important or not.

Healthcare

Posted on by Grayson
I’m going to go over some things that I heard last night in Obama’s speech about healthcare.

“neither illness or accident”

My family has been changed terribly several times by illnesses and accidents. Did we have insurance each time? Almost without exclusion, no we did not. We cannot afford health insurance for any member of our family.

“rose above weight of our politics”
I’m not entirely sure this is true. Yes, within the Democratic Party, differences were resolved in order to bring a majority vote in favor of the bill. Still, no Republicans voted for the bill and that may come back to bite the administration in the near future.
“change comes not from the top down but from the bottom up”
Changes from the top-down often end up leading to problems, but changes from the bottom-up tend to stick around longer.
“answers the prayers of every American who has hoped deeply for something to be done about a healthcare system that works for insurance companies and not the people”
Damn straight. I’ve tried to look at health insurance on my own. In my last post, I discussed the outrageous fees and lack of assistance by health insurance for those with pre-existing conditions. I’m sorry that I have a chronic illness – trust me I didn’t ask for it. Why do I currently have to pay more? I shouldn’t, and this bill should work on that.
“every parent who knows the desperation of trying to cover a child with a chronic illness and being told no over and over again”
It was about this point in the speech when I broke down crying. I remember being so sick when I was little and dealing with all the doctors. We were lucky enough that we lived in Oregon, a state with great insurance programs. I can’t imagine having to go through everything without the assistance of the government.
“it’s a victory for them, it’s a victory for the American people”
I hope that everyone will come to see this in the long run.
“will not fix everything that ails our healthcare system but it moves us decidedly in the right direction”
It is obviously not a quick fix. This isn’t like the system backed by Mitt Romney in Massachusetts, where we can flip a switch and fix everything. It will take time and hard work, but it will be worth it in the end.
“we have a solemn responsibility to do things right”
For ourselves and future generations.

Adaptation

Posted on by Grayson

In recent posts, I’ve talked about how difficult it is to remember a time before RA. As a four-year-old, I was super active. I loved to run around and dance. I was certain that I would grow up and be a dancer and/or actress. A few months later, I would get sick. I’d spend hours scratching rashes, leaving my skin raw. I’d even sleep for more than 24 hours a few times. Worst of all – my energy level declined and I was constantly fatigued.

For a while, I didn’t really have any fight in me. I just didn’t have the energy. I slept a lot, stayed inside, and became an expert at Yoshi’s World.
When I was in-between my freshman and sophomore years of high school, I started running a lot and ended up with an eating disorder. I’m still coping with it. Sometimes it is hard to tell the difference between that and the lack of appetite that comes with RA. Running also, unfortunately, screwed up my knees even more.
It’s hard to adapt to RA. Just when I think I’m doing better, it flares up again. The disease keeps me on my toes. Sometimes it is hard to even get in the shower, let alone walk to class or do yoga. You never really know when the disease is going to get worse.
I try to not limit myself because of my RA. I am not my RA and I won’t let it control what I do. I can’t do anything to control the effects, but if I can do something, I’m not going to pass on it because I might end up maybe getting hurt. As a side effect, there are times when I don’t listen to my body. I push through the pain, which usually makes things worse. Still, I’d rather live and be in pain than stay in bed all day.

Who would you be?

Posted on by Grayson

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.
___
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.

RA Blues

Posted on by Grayson

I try to be a pretty happy person most of the time and not let RA get me down. A couple of weeks ago, I had a spell where I was pretty upset about the fact that I never really have had a “normal” life. I don’t remember what it was like to run without pain, to wake up in the morning for more than just a two-week stretch without feeling like I need six more hours of sleep.

Sara Nash of Single Gal’s Guide to RA has both a comic and a post about how she’s dealt with her diagnosis.