Monday, March 29, 2010

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.

Saturday, March 27, 2010

Blaaah

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 to say 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.

Monday, March 22, 2010

Healthcare

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.

If You Think Healthcare Was A Bad Idea...

This is a cross-post from my other blog, How To Ace Life.

You don't know my step-dad. He has diabetes and has had to have two toes amputated because of it. Now he is thousands of dollars in debt. He can't work his old job anymore because of how hard it is on his body. Months later, he is still in pain and has to elevate his feet.

You don't know my mom. She has been sick since November with what seems to be a large number of cysts in her abdomen. She is in a huge amount of pain but won't go back to the doctor because it costs too much and she can't really miss work. She works at the same place my step-dad used to work, which is very physically demanding. Her employer is too cheap to pay her well or give her benefits despite how hard she works for them - both on and off the clock.

A few years ago, I literally watched my mother die in front of me as a result of a miscarriage. We were lucky enough that they saved her life, but she never got the blood transfusion she needed or other necessary care. Why? Because she didn't have insurance. As a result, her body does not function right often and her memory has been affected.

You don't know my sister. Her life was altered drastically when she had a seizure last May. I was the only one with her and I swear she looked dead. It was the scariest thing I've ever seen. As we were getting her into the ambulance, she was trying to get out of the stretcher, screaming that we couldn't afford this. She was seventeen at the time and in a huge amount of pain, but was worried about the family financial situation more than herself. Her life was saved later when she also had to have an emergency appendectomy. We were lucky enough that she was on Badger Care because of her seizure. It's odd how things work out sometimes.

You don't know me. I lose insurance at the end of July from Carroll. To buy insurance on my own, because I have Rheumatoid Arthritis, it would cost $1600 a month and not cover anything more than routine doctor's visits - not medicines, tests, x-rays, physical therapy, etc. Medications can cost anywhere from $100 a bottle to $2500 a pill.

And you don't know the people of America. There are families who are teetering on the edge of homelessness, having to make the choice between buying food and paying the bills. They don't even have the money to think about getting insurance, let alone cover their children and themselves. The story of my family is odd, but not unique by any means.

Saturday, March 20, 2010

Adaptation

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 send 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.

Tuesday, March 16, 2010

Blah

I feel sick to my stomach and I'm in a bad mood. This is becoming a really annoying trend and I'm pretty tired of it.

Maybe the rheumy will have good news for me on the 8th.

Monday, March 15, 2010

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.

___

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.

Friday, March 12, 2010

RA Blues

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.

Tuesday, March 9, 2010

Rheumy Appointment #1

So I had my first rheumy appointment in forever today. Here's the short synopsis of what went down:
  • Got there perfectly on time and the nurse was ready to take me back before I was even fully checked in
  • Found out I lost like two pounds, haha
  • Kicked a dude out of the examination room we were going into
  • Went over medical history with doctor's assistant and then the doctor, which took forever
  • Changed into a medical gown for the first time since I was like 7
  • Physical exam - not invasive at all, DR was really nice
  • Pee test!
  • Blood drawing for complete lab work - they took TEN vials
  • Cranberry juice!
  • Hospital pants and robe
  • X-rays - 3 on each hand and foot, and two on each knee
All in all it was pretty exciting. Everyone at the hospital/Medical College was really, really nice. I even took this awesome picture for y'all to see:

The pants were entirely too big, haha, but whatevs - they were comfy.

I was pretty woozy after the blood business. I haven't really been good with needles since I had to be around them all the time when I was little and my disease was still a mystery to us. I'd also like to point out that I have one heck of a migraine right now. Awesomeeee.

My follow-up appointment is on April 8th.