Sunday, November 22, 2009

I Have RA. It Doesn't Have Me.

I realize my previous post was the fourth in a row about great online resources for people with RA. It made me start wondering what took me so long to find them! I mean, I've had RA for a year and a half now - why did I wait until now to start reading these uplifting resources?

I think part of the reason is that I only recently realized just how valuable it is to talk to other people who actually have RA and who really understand what I am going through. It's simply amazing the hope and inspiration that you can get from a perfect stranger.

Also, I think part of the reason I didn't go searching for these resources sooner was because I had a few bad experiences with literature about RA actually making me feel worse. Like my free subscription to Arthritis Today. APL and I were able to laugh about how discouraging some of the articles sounded (we actually jokingly renamed the magazine in our house to Dying Alone Monthly). We had a good laugh, and laughter is always a good medicine.

But, though we laughed, there's no denying that some of those discouraging sentences are still stuck in my head. Like the one that said "sometimes having arthritis means sitting on the sidelines while your friends and family dance at a wedding." Or the one that said "research has shown that people with RA have less emotional support and social companionship than people without RA." While I realize the magazine encompasses other kinds of arthritis besides RA, and maybe slowing down and letting go is a valuable coping mechanism for some people, I am only 26 years old!!! I haven't even had my own wedding yet!! This is not what I want to hear about my future!! So, after we stopped reading that magazine (for six months it went straight into the recycling bin after it arrived) I guess I was a little gun shy about searching for hope and finding the opposite.

Maybe most importantly, I have to admit that one of the biggest battles for me over the last year and a half has been openly admitting to the changes RA has brought to my life. I don't think I really ever went through a denial stage - I think I accepted that my diagnosis was going to require me to change my life pretty quickly. But it was more of a private acceptance. Within my own little family change was a fact, but outside of that I've struggled with how to deal with RA in public. At first I even had trouble talking about it with friends and family. I still have trouble making the words "I have RA" come out of my mouth and I still struggle with it professionally.

I know I've always admitted to and dealt openly with my RA on this blog, which is technically public. But somehow this blog always felt more private to me. Maybe its because at first no one was actually reading it. Maybe it's because, aside from my friends and family who know me personally, this blog is written by an anonymous "Z."

Maybe I've been afraid for the past year and a half to publicly link myself with RA. In my real life, if I make the choice to tell a particular person that I have RA, I can evaluate the situation for possible negative outcomes. Somehow I guess it felt a bit reckless, especially considering professional situations, to just announce to the world that I have RA, without any control over how people might change their opinion of me.

But you know what? I don't have any control over anyone's opinion anyways. And having RA is nothing to be ashamed of. It changes me, but it doesn't define me. The three inspirational women who's blogs I have just posted all have their full names on their blogs. And I've always claimed that this blog was all about honesty, but I haven't been completely honest here, have I? So, I'm going to take a deep breath and do it now:

My name is Mariah. I have RA. It doesn't have me.

Rheumatoid Arthritis Warrior

I'm still loving the NYT Article on RA for exposing me to so many wonderful RA resources. Rheumatoid Arthritis Warrior is another really great blog about living with RA and staying optimistic. The author of the blog has had RA for three years and has what I think is a really great outlook. The blog is based around humor, inspiration, networking, and teaching. I will certainly be following it from this point forward. ~;o)

Saturday, November 21, 2009

Autoimmune Portriat Project

I know I've said countless times on this blog that one of the most frustrating things about RA is its invisibility. On the outside, I look like a perfectly healthy 26-year-old, which can make life pretty tricky on bad days when I need to ask for help.

Though reading The Single Gal's Guide to RA, I just found an amazing photography project that addresses this very issue! Photographer Jodi McKee (who has RA herself) is creating a photo blog with portraits of people with RA and other autoimmune diseases. I think this is really interesting because it highlights the invisibility of these diseases. I also like her idea that newly diagnosed patients could look at her photos of beautiful, smiling people and know that they are not alone. While I would never wish RA or any autoimmune disease on anyone, somehow it does help to think that I am not alone, even though I'm not exactly newly diagnosed anymore!

I will certainly be following this photo blog from this point forward (HA!) and I recommend you check it out too!

The Single Gal's Guide to RA

One of the women interviewed in the New York Times RA Feature has her own blog: The Single Gal's Guide to RA. Even if you're not single, this blog has some really awesome (and optimistic!) content about living with RA. I plan to follow her blog from this point forward. (Ha!) Check it out!

Friday, November 20, 2009

The Voices of Rheumatoid Arthritis

Today, my sister sent me a link to a feature about RA in the New York Times. It featured short interviews from six different people with RA. I thought it was really interesting to see the different perspectives of the disease from different ages and situations. But while the six perspectives were quite different, I still found that I could identify with what all of them were saying.

I think it's really great that the New York Times featured this piece about RA. Since RA can often be an "invisible disease" (i.e. "you don't look sick"), I think it's really important that people try to understand how difficult it can still be to deal with RA even when you appear to be perfectly healthy. One of the things I still struggle with is people not understanding why a 26 year old who looks perfectly healthy might be too tired to hang out anymore at 8:15pm. ~;o)

Thanks for sharing this article, little sister!

Thursday, November 19, 2009

Mouse Ouch!!

Today my right wrist is killing me.

Unfortunately, this pain is not conducive to the hours I need to spend in front of the computer outlining administrative law.

But at least this little mouse ouch .gif is cute.

Wednesday, November 18, 2009


This has nothing to do with RA.

It is just plain awesome.

Thursday, November 12, 2009

Thanksgiving Challenge

If you are internet-savvy enough to be reading this blog, I'm guessing you probably know what Facebook is. In case you don't, Facebook is a social networking site where you can have a profile about yourself and connect to with your friends. Facebook also lets you post a short "status" to tell your friends how you are or what you've been thinking about.

When I signed on to Facebook this morning (not gonna lie, during my administrative law class...oops) I saw the following in my cousin JP's status:

Thanksgiving Challenge: Every day until Thanksgiving, think of one thing that you are thankful for and post it as your status. "Today I am thankful for." If you think you can do it, then re-post this message as your status to invite others to take the challenge, then post what YOU are thankful for today.

It really made me think. Despite what I thought were my best efforts to be positive, I know I have been focusing a lot on the negative lately. Even though I've had some reminders that I ought to focus on what I have to be thankful for, I've had a bit of a hard time doing it lately for some reason.

But I know there is always something to be thankful for. And I'm pretty sure, despite my negativeness these days, I can think of at least one thing to be thankful for every day for two weeks. So I am going to take my cousin's Thanksgiving Challenge and post one thing I am thankful for in my Facebook status each day. And, for those of you who are not Facebook friends with me, I'm planning to re-post them here as well.

Thanksgiving Challenge:

Thursday, November 12th:
I am thankful for my cousin, JP, who has been my friend all my life.

Friday, November 13th:
I am thankful that River snuggles with me on the couch when I am feeling icky. Snuggle puppy can always make me feel better.

Saturday, November 14th:
I am thankful that APL surprises me with breakfast when he knows I'm not feeling that well.

Sunday, November 15th:
I am thankful for six inches of fluffy snow and a squeaky toy. It made River ridiculously happy, which was so much fun to watch.

Monday, November 16th:I am thankful for cameras. Looking at pictures always makes me happy.

Tuesday, November 17th:
Today I am thankful for my dad and his crazy ideas - looks like APL and I are going to Australia for Christmas!!

Wednesday, November 18th:
I am thankful for the interwebs, which allow me to stay connected with friends and family scattered all over the country.

Thursday, November 19th:
Today I am thankful for airplanes. They let me visit my family for Thanksgiving, SCUBA dive on the Great Barrier Reef, and they bring RK home for a visit!!!

Friday, November 20th:
I am thankful for a week break from law school. Being a 4L is exhausting.

Saturday, November 21st:
I am thankful for our friend MS for watching River for us while we are in California next week.
Sunday, November 22nd:I am thankful for Game Night with friends tonight!

Monday, November 23rd:
I am thankful that I get to see my mama today!!

Tuesday, November 24th:
I am thankful for my Great Uncle (and godfather)!!

Wednesday, November 25th:
I am thankful for mommy & me day at The Getty with APL and CC and all of our mamas!!

Thursday, November 26th:
I am thankful for our family, mine and APL's, here and far away. I love you all.

Happy Thanksgiving!!!

Tuesday, November 10, 2009

Please Knock on Every Piece of Wood Ever

Before reading this post I would really like you to please knock on every piece of wood ever. No, really. Please do it.

Did you? Ok.

Can please you cross your fingers too?

Ok. You may proceed to read:

Plumber Damage Update:
After who knows how many cubic feet of dirt, rock, mud, and water were removed from the hole in our front yard, the sewer line in question was finally uncovered. It was then determined that the pipe had been destroyed by a tree root. And the HOA is responsible for trees and their roots. looks like the HOA will have to cover the costs of "Sewerpocalypse 2009." Which means that technically APL & I are still paying for it, but we'll get to split the costs with the other 100 owners in our complex. Which makes it much more affordable and less horrible.

I'm afraid to even feel happy about it, lest I do something to pop this small luck bubble.

"Servicio de agua!"

Plumber Damage Update:
The backhoe arrived bright and early this morning and set up shop in our front yard, which is a common area of our townhouse complex. Since the collapsed sewer line is nine feet underground, there was a lot of digging to be done. They started digging, making a huge pile of dirt on the lawn, which I'm sure all the neighbors will love. They were digging, digging, digging until one of the guys yelled "Servicio de agua!" and the digging stopped immediately.

Don't speak Spanish? Let me translate for you: they hit a water line!! The hole, about 3 feet in diameter and 7 feet deep at the time, was filling up with water!!! Muddy nasty water had to be drained out of the hole, and digging had to be stopped until they could figure out where the water was coming from and how to shut it off.

Unfortunately, the fun doesn't end there. Once the hole was drained, they dug another two feet but didn't find the problem. So, it was determined that the hole needed to be widened. How to widen it? Chop up the sidewalk. Did I mention that this was brand new sidewalk that the HOA had just had replaced? Yeah, well it's gone now. And they are still digging. And, as far as I know, they still haven't found the problem.

Ha? Ha? Ha?

P.S. The picture is of the backhoe in my front yard!

Laughter is the Best Medicine

A few months ago, a stranger emailed me out of the blue to tell me about the impact my blog has had on her. It was just the push I needed to start blogging again after a few months of blog silence. And I was really grateful to her for that.

This morning she emailed me again to offer her support through the tough time APL & I have been having lately. She told me how strong I was and encouraged me to look at the positives in life, which, despite my recent complaining, I am honestly always trying to do. She helped me find the right perspective to keep moving forward. So I am very grateful to her again.

However, she also made me realize that the words in some of my blog posts, like the last one, could come across quite differently to readers who don't know me personally. When I started this blog over a year ago, the only people reading it were my friends and family. I found it to be a good way of keeping everybody posted about my health developments without me having to go through the exhausting process of repeating myself over and over again.

Today, I know I have some readers who don't know me outside of the interwebs. So while friends and family reading a post may find it obvious that I am joking my way through a problem, I guess the words themselves can sound more serious than I meant them to. For example (and for the record!) I don't really have a drinking problem. In fact, I honestly hardly drink at all. That was just APL and me joking our way through the crappy couple of days we have had, and my friends and family know that about me. So now I hope all my readers know it too.

Because laughter really is the best medicine when everything seems to be going wrong. Sometimes it's all we have. APL and I do our best to laugh all the time, in every situation. (Speaking of which, a plumber damage update is on its way!!) I know that I am really lucky to have APL, because he keeps me laughing whenever I feel like giving up. And that is worth all the medicine in the world.

I really do always try to look at the bright side of the situation. I know that I am very lucky and that there are many people in the world who are worse off than I am. I know that it could always be worse. But I also know that it could certainly be better. And I have to do what I can to work towards making it better. And, sometimes, the only way for me to start feeling better is to vent about what's making me feel bad. Since APL and I have talked about this stuff until we're blue in the face, sometimes it seems to help me to vent into cyberspace.

To everyone who is reading this (friends, family, and strangers): Thank you for listening. It helps.

Monday, November 9, 2009

Vodka O'Clock

Plumber Damage Update: After an expensive camera operation, it has been determined that the collapse is in the sewer pipe "somewhere near" where our line attaches to the main line. If the problem turns out to be with the main line itself, the HOA will cover at least some of the costs. If the problem turns out to be fully on our line, looks like we'll be responsible for the whole cost. The only way to find out is to dig. Did I mention that the problem is nine feet underground?

Estimated cost to start this operation? $5,000.

I think APL sumed it up best when he said: "Pursuant to how this day has turned out, I may have vodka for dinner."

While I know it's less than healthy to solve your problems by drinking, I can't help feeling like APL is right. I mean, at least that glass will be half full.


I know I am doing better. I know things are better than they were a year ago. Actually, more like a year and a half at this point. I know all this.


But, no matter how positive I try to be, some days it feels like things will never stop going wrong. Some days it feels like if there is ever an option for something to turn out good or to turn out bad, it always turns out bad. This isn't my favorite feeling, but I don't quite no how to shake it on days when it feels like everything is going wrong.

Take today, for example. This morning I went to the eye doctor because my contacts have been a bit blurry lately. Though that prescription was supposed to be good until January, it turns out my eyes have already gotten worse. My prescription needs to be strengthened. This would be no big deal except that, for some reason, my right eye doesn't seem to be focusing properly. Which means that even with the strengthened prescription, my right eye is still blurry. Which I suspect contributes greatly to the headache I have had for about a week and a half now. The doctor said he can't see anything wrong with the eye, which is good, but that also means he can't fix the problem. He gave me some contacts to try and said my eyes might adjust to them. Might? Oh, good. I'm going back in a week to get checked out again. In the meantime, I still have a wicked headache.

Today APL is also at home waiting for the plumber to deal with more bad news. Extremely bad news. Why is it that with our house when something goes wrong, it really goes wrong? Here's how it started:

On Friday I noticed some water on the floor in the laundry room. No good. So we called a plumber, who said that our water heater was 20 years old, leaking, and needed to be replaced. Which is true. So there's several hundred dollars on that. However, the next day we noticed that when we turned the shower on, water was coming up through the drain in the laundry room floor. Sewage water. Gross. We poured some draino down there. No help.

So then we call roto-rooter to unblock the pipe. Three hours and lots of equipment later, including some equipment getting broken from whatever was blocking our pipe, roto-rooter determines that we have a collapsed sewage pipe that will need to be excavated. Really? Excavated? Awesome.

The slightly good news is that, depending on the exact location of of the collapse (where it is physically located, whether it is a shared line) our HOA may be at least partially responsible for the cost. But, the extra bad news is that our HOA is a complete disaster and every time we deal with them we end up with a much bigger headache than we originally started with. So, no matter where the break turns out to be located, dealing with it probably won't be pretty.

I'm also feeling sort of discouraged about how things are going at school. My dad had this crazy idea of taking an intersession law class in Australia over the winter intersession. His idea was that it would be a good way to earn some credits towards finishing my degrees, reduce the stress I will be under next semester, and give APL and me a little mini vacation that might lift our spirits up. APL and I love to travel, so a vacation like this could be like pressing the reset button for the new year. It was also the first idea to make things better that I've felt excited about in a long time.

The problem is that I have to get the credits approved by the Dean's office before I can sign up for the program. Though I turned in the paperwork for the class last Tuesday, and though there is another student form my law school who already has approval for the second session of this program, for some reason the Dean's office really seems to be dragging their feet on approving the session that I want to attend. And, since this traveling would take place over the holidays, the longer we wait to book our travel the more expensive it will be. How long can we wait before it becomes totally out of our price range? Especially since we have so little money coming in these days?

So I am anxious to know, one way or the other, whether the credits will be approved. On Friday, I politely asked the Dean's secretary when I might have a decision. This morning I got a message that the Dean wanted to meet with me. I thought I would find out, one way or the other, whether I could go to Australia this winter. But the Dean only wanted to tell me that she would make a decision by the end of the week. And she seemed sort of annoyed that I had asked at all about when I would hear at all.

I know she still could decide yes at the end of the week, and a week will probably only change the cost of things a little, which hopefully we can still afford, but somehow it just felt really discouraging that the Dean's office wasn't being more helpful and encouraging. And the little pessimist inside of me seems to have already decided that the only plan I've been excited about in a while isn't going to work.

And my hands hurt.

Today is not my favorite day.

But I'm also sick of being pessimistic. I'm sick of being discouraged. When is our luck going to change?

Saturday, November 7, 2009

Autoimmune Support Group

Several months ago, I saw a flier on the wall of my rheumatologist's office offering a women's support group for athletes with chronic illness. Since one of the things I continue to struggle with is how to be active while my body feels so awful, it sounded like a group that could potentially be really helpful for me. I missed the first meeting because of the chaos with the conference, but I am happy to report that I finally met with the group this morning.

The group has turned into a small, informal autoimmune support group. There were four of us who met at a local coffee shop this morning. One woman also has RA, and the other two have different autoimmune issues. All three were older than me and had been dealing with their conditions for at least five or ten years - pretty much since they were my age. But, despite these differences, we all had in common that our illnesses can make it difficult to stay active - or even keep up with others sometimes.

It was really amazing to talk to these women. While I love APL and RK with all my heart, and I never would have made it through the past two years without them, there is just no way for them to completely understand what I've been going through. And though I can email with my cousin who has RA, and I've met a few people online who have RA, I don't think I've ever really had the chance to sit down and talk face to face with someone who really understood me. I mean, these women were complete strangers to me this morning, but, on a certain level, they understood more than anyone I've talked to since I got diagnosed.

One of the women made a really interesting point about autoimmune issues and people who are really high-achievers in their lives. I'm not sure I'm going to be able to communicate it properly here, but it really struck me as true, so I'm going to try. She said, in a way, it makes sense that people who are really driven end up with autoimmune issues. Driven people tend to be really hard on themselves, and, metaphorically, that's exactly what an autoimmune condition is - the body being really hard on itself. I think this makes a lot of sense. I've never really thought about how being an overachiever - in school, in sports, etc - was another way of being hard on my body. I've been hard on my body all my life - it didn't start with the RA. So it makes sense that part of dealing with an autoimmune disease is finding ways to ease up on yourself, give yourself a break, and finding ways to love yourself as you are. I'm hoping this group can give me some advice on how to do that!

I have to admit that it is a little bit scary that these women have been dealing with autoimmune issues for five or ten or twenty years, but still haven't found all the answers. But, somehow, it was also really comforting to know that I am not all alone. I'm not the only one struggling with my messed up body and immune system. It was reassuring to hear that I can get the disease under control and get my life back on track from people who have actually done it themselves - or have at least made more progress than I have! And it was also really good to realize that there are resources for me to find support.

The group is hoping to meet every other week or so to talk about these issues. We also talked about getting together to do some moderately active things - like a bike ride or a hike - where we all know we'll be going at a more moderate pace than the rest of the super-active Boulder people! And that sounds pretty good to me too, since I've been having so much trouble getting started being active lately. I think this group could be a very good thing for me, and I am already looking forward to the next meeting. And I'm glad I responded to a flier I saw on the wall.

Wednesday, November 4, 2009

Wild Thing, I Think I Love You

After my exam on Wednesday, I literally slept for two days straight. It didn't even occur to me to try to go to class on Thursday morning. I was completely beat and there was nothing to do but sleep. So I slept.

But, after all that sleeping, I was feeling much better by Friday and I ended up having a very happy Halloween! My friend CC came all the way from Los Angeles to visit us for the weekend. CC and I used to play water polo together in high school, so we go way back. It was really fun to have her around this weekend for some much needed girl time. She also made everything we did this weekend, from special events to just sitting around in the living room, a lot more fun.

On Friday APL and I held our 4th Annual Pumpkin Carving Party! Although it snowed and made everything muddy and ruined the corn maze, we still picked up our pumpkins at the farm this year. Last year, I didn't feel up to carving a pumpkin. I decided that achy hands + slippery pumpkin guts + knives = not such a good idea. But, despite the trouble I have been having with my hands lately, and despite how exhausted the conference and the exam made me, for some reason I felt really good on Friday. Maybe the acupuncture is working, maybe it was just the lifting of all the stress I have been under lately, maybe it was the two days of sleeping. Whatever it was, I'm not going to question it! I carved a pumpkin and had an amazing time at our party!! (Though I must admit that I did have a little help scraping the guts out of the pumpkin when my hands got tired. But, hey! It still an improvement over last year so I'll take it!)

On Saturday, CC, APL & I put on our costumes and went out on the town. We had a wonderful time. CC dressed as a geisha in a kimono I brought back from Japan with me. We had a lot of fun trying to give her the equivalent of crazy geisha hair and makeup with the limited supplies I had around the house. I dressed up Max from Where The Wild Things Are and APL was my Wild Thing (in the movie his character was called Carol). We were all disappointed in the disappearance of the Naked Pumpkin Run, but we had an awesome time hanging around the Pearl Street Mall and checking out all the creative costumes. I even climbed on APL's back and we ran around the mall, just like Max rides the Wild Things in the book and movie. Honestly it is the first time in a long time that I can remember really enjoying myself and not worrying about how I felt. I just felt so happy to be there with CC and APL.

Especially my Wild Thing. He makes my heart sing.