Engagement Photos

Last week, before APL went back to Boulder to start his new job, we also met with a potential wedding photographer in Groveland. Since we probably won't get to be in Groveland too many times over the next year, we are trying to take advantage of our time there to get done what wedding planning we can. The photographer was a really nice guy. We talked to him about our plans and he showed us a bunch of his work. We really liked him and we thought his style would suit what we have in mind for our wedding. 

Then he offered us a  completely free engagement shoot - an awesome opportunity to try working with the photographer at a price we could totally afford! But, I have to admit, I had really mixed feelings about doing the shoot because of how I was feeling that day. I was totally exhausted from law school finals and driving to CA and I absolutely ached everywhere. I had dark circles under my eyes from fatigue. I had yet another cold sore on my lip that still refuses to heal. My face seriously looked like someone hit me in the face with a baseball bat. I also still have quite a bit of prednisone weight gain that I've been hoping to lose before the wedding. And we had no nice clothes or makeup or anything. All in all, I was not at my most confident in front of that camera.

But APL and I decided to do the shoot anyways. We figured if the photographer could get some good pictures of us even with me in a sort of rotten state, he would probably do an awesome job at the wedding. And, if not, we really had nothing to loose. I still felt a little insecure about the whole thing, but APL distracted me in front of the camera and, in the end, we got some awesome and really artistic engagement photos of us. (Side note: I'm not sure why, but I feel a little bit weird about sharing these photos on this blog. I think it's because the photos feel sort of personal to me and I know that some of the people reading this blog are total strangers. But it's not like I've been exactly private on this blog!! I've shared my deepest thoughts and feelings, so I guess I can share a few photographs of me and APL too!)

I also learned a valuable lesson. Again. I need to eat and I need to rest or I will crash. You'd think I'd have that one figured out by now, but I'm still making mistakes with it. I didn't really have a chance to eat much before the photographer arrived and then we talked for an hour and then we went out and posed for photos for probably an hour or two without me eating anything or really taking a rest. By the end of the shoot I thought I was going to faint and I totally crashed for the rest of the day. Bad, Mariah! Bad. Why can't I seem to learn that lesson properly?

APL and I decided that we would have to assign my bridesmaids very specific tasks at the wedding: (1) make sure I sit down once and a while and (2) make sure I eat. Because I am obviously still incapable of taking care of myself!

Snakes Are Made of Evil

Indiana Jones totally had the right idea: snakes are made of evil.

Snakes have always given me the jibblies, even the harmless ones. They are so creepy the way they slither!! But I developed a particular dislike for snakes a few years ago when I was in Africa with my dad. One night, while we were camping in the middle of nowhere in Botswana, I almost stepped on a puff adder. Literally. As in: I was about to bring my foot down on top of it when I saw it. In case you've never heard of this particular species of evil, puff adders are extremely poisonous and responsible for more fatalities than any other African snake. If that thing had bitten me out in the middle of nowhere, let's just say I probably never would have had to deal with RA. 

Unfortunately, the evil nature of snakes was fully confirmed on Friday in Groveland. I was sitting by the barn, usefully watching APL's dad, brother, and brother's girlfriend work,  when APL's mom yelled from over by the orchard. She had seen a snake. A rattlesnake. River and her Rhodesian Ridgeback, Sita, had found it. (Sita is the other dog in the picture with River and little T in my last post.)

The first thing we did was check both dogs. They both seemed to be ok. Neither was crying or seemed hurt, and we didn't see any bites. I took both dogs over to the patio and sat with them in the shade. I didn't even really want to see the snake, which was curled up in the tall grass near the orchard, rattling in its evilness. I was more than happy to take the responsibility of keeping the dogs away from it. 

APL's mom got some shovels from the pump house and the family stood around, trying to figure out how to safely kill the rattlesnake since it was on the property threatening the dogs and the family. Luckily, right then two Groveland locals, who had been helping lay the foundation for the barn, showed up. They had killed rattlesnakes before, so they showed APL's parents how to chop its head off with a shovel. 

What followed seemed like a scene out of a horror movie, at least to me, especially considering I was already pretty shaken up over how close the dogs had come to being bit. The headless snake was still moving as it lay there on the driveway. They all picked it up and passed it around, feeling the  dead muscles move, because the body was no longer dangerous without the head. Then, one of the guys decided it would be a good idea to skin the snake. They joked about eating the meat (which I guess people actually do) but really it was to keep the skin. After slicing the snake down the belly, the skin peeled right off, like an evil banana peel. The most disgusting part of this whole endeavor was that the now headless and skinless snake meat body was still moving. I wanted to vomit. 

But this story unfortunately gets even worse. It wasn't until then, at least fifteen minutes later, that we discovered two small, bloody holes on Sita's shoulder and noticed that she had put her tail between her legs and started to act funny. The rattlesnake had bitten her. I ran get APL's mom's purse while his brother got the car. They loaded her in and drove her to the nearest vet, which was 20 miles away.

It has been several days of really painful waiting to see whether Sita will make it. I've been worried about poor Sita and the pain she is in. I've been worried about APL's mom because of how much she loves that pup and because she's now alone in Groveland (as APL's brother and girlfriend went home to DC and APL's dad and I are back in LA.) And, selfishly, I've even been worried about myself. What if River had been bitten? She's 30 pounds lighter than Sita. Her coat is black so we never would have seen the blood like we did on Sita. What would I ever do without my River, who I am so emotionally dependent on right now? (She's curled up with her chin resting on my feet as a type this.)

Although Sita was better off that the bite was on her shoulder and not her face, the venom has killed her skin all the way down her leg and her neck is all swollen. She's been on an IV for a few days and is going to need surgery to close the wound on her leg. But, thankfully, it looks like she's going to make it. She's walking and eating and seems to be doing better. So that is  really good news. It was also good to see how much love there is in APL's family in responding to this emergency.

But, in conclusion, snakes are made of evil. Pure evil.

Lessons From Four-Year-Olds

Before APL went back to Boulder for work, one of our old friends from high school, HB, came to visit us in Groveland. She also brought her kids with her. It was really wonderful to see her and it was a lot of fun to finally meet her kids. HB is an absolutely amazing mom. She almost makes it look easy – wrangling her precocious 4-year old daughter T with her 11-week-old son J strapped to her chest. Nursing J every two hours while at the same time teaching T about manners. I was pretty much in awe of her mom skills.

But their visit also brought up a lot of interesting emotions for me. Even though I don’t expect to be a mom any time soon (and getting pregnant with RA will be a complicated process in and of itself) I still find myself worrying about how I will ever be a good mom and have RA at the same time. It isn’t something that I actively worry about on a daily basis. It’s more like a monster hiding under my bed that attacks me at my very weakest moments. When I’m already feeling tired and frustrated, and when I can barely take care of myself, the thought pops into my mind: how on earth will I ever take care of my children?

I know I’m feeling worse than usual right now, and I know I won’t always feel this bad. But even averaging the “good days” since getting diagnosed with RA, I still worry about how I will manage to be a good mom, especially on the bad days. I also know that I’ve only been learning to manage my RA for 2 years, and that sometimes it takes many years to adjust to having RA. By the time I have kids I will hopefully be in a much better place. But it still scares me because I have come to recognize that I will probably never again have as much energy as I would like to have. I will probably always be at least a little tired. And sometimes my joints will hurt no mater what I do. But moms are moms all the time, no matter how they feel. 

During their visit, T, who is almost 5, decided that she really liked me. She followed me around. She wanted to sit on my lap or next to me at all times. She wanted to do absolutely everything that I did. And I wanted to play with her – she was so smart and so funny. And I wanted to help take care of her. But it was hard for me to get off the floor once I sat down there with her. It hurt when she crawled over my knees and it hurt to lift her up to the sink to wash her hands. One evening, as my energy waned, I had to go in my room, shut the door, and cry for a half hour because I hardly had the energy to move, let alone play on the floor and answer a zillion questions.

But while I certainly got a glimpse of how hard it is to be a mom, particularly how hard it is during RA pain, I also got a glimpse of how having kids will be worth all the trouble. For one thing, I totally picked the right dad! It was so much fun for me to watch APL and the kids. He was silly with T and let her sit on his lap and tried to figure out how to answer all of her questions. He even held baby J a few times and actually looked pretty happy about it. APL will be an awesome dad.

I also learned something important from sweet little T. I guess I always thought having kids would only make it harder to deal with my RA. It never actually occurred to me that the kids themselves might make it easier for me to deal with the pain. But one morning T watched APL wrap up my knees and afterwards she patted them gently and pretended to put medicine on them because she understood that they hurt me. And strangely the pretend medicine did make me feel better, or at least happier. Plus, once she understood my knees hurt, she was a lot gentler around them. 

But my very favorite moment was one evening when she hugged and kissed me goodnight. After hugging me, she also pulled back the blanket I was laying under and gently kissed each of my knees. It made my heart melt and it made me feel more hope about being a mom than I can possibly explain. Thank you, sweet T. I hope someday you will understand the gift you gave me.

Productively Unproductive

I am writing this post under the shade of an enormous oak tree on the back patio in Groveland. I don’t have any internet here (which honestly is probably a good thing in terms of relaxing, to be disconnected) so I will post this next time I have internet. The sun is shining, a soft breeze is blowing, and I’ve been walking through the tall grass and thinking (or at least trying to think and, rather unfortunately, trying to walk). I decided I wanted to write this post now. This blog has become an outlet for me, and sometimes I just get in the mood to write!

This time the desire to write probably has something to do with me feeling a bit useless right now. Everyone else is working on projects. APL’s mom is mowing the tall grass that has grown in the orchards so that she can access all her baby fruit trees to take care of them. APL’s father and APL’s brother and his brother’s girlfriend are literally starting to build the barn – the final part of the foundation was just poured yesterday and they are starting to build the frame as I type this.

Even APL, though he is not here right now, is being productive. He flew back to Boulder yesterday to do a contract job today and start his brand new job on Monday. He is being so responsible and paying all the bills and taking care of me even when we’re apart. And everyone here is taking care of me too, because at least some of the motivation behind the work they are doing now is to get the Groveland property ready for our wedding next May. Which is probably part of the reason I feel so frustrated that I am sitting on the back porch, drinking a soda in the shade, and not helping at all.

But, in a way, I guess I’m working on my own project: resting. I know it sounds silly, but resting is actually a challenge for me. Especially when I want to help. It always seems like there should be something I could do to help. However, the other problem is that I’m not very good at limiting myself. Ok, ok. I’m really bad at limiting myself. In fact, last time I was here in Groveland I worked myself way too hard and my body really paid for it afterwards. I even knew at the time that I was working too hard and I still couldn’t stop myself. So this time I’m simply not working at all. I’ve helped clear the table and washed the dishes a few times, but other than that my project is resting. Sitting still. Giving my poor body a break.

Unfortunately, it isn’t yet having the desired result. To be perfectly honest, I’m actually feeling worse right now physically than I was during finals or during the semester. I think it’s probably because I had adrenaline and anxiety to keep me going during finals and, for that matter, over the course of the semester. But now I’ve completely crashed. Literally every joint in my body aches. My toes. Ankles. Hips. Shoulders. Wrists. Fingers. Elbows. Knees especially. And every muscle connected to those joints is sore, which is pretty much every muscle. And I’ve got a headache and no energy whatsoever. 

But I’m trying to be patient with my body. I know I did a lot of damage to it over the semester. And over the last two years for that matter. I haven’t exactly been taking it easy since I got diagnosed with RA, seeing as I’ve also been in law school and law school takes a toll on healthy people!! I know it will take me some time to recover to “feeling good” and I’ve got to try to be patient. But it really isn’t easy.

For now I’m just trying to enjoy relaxing, in this moment, regardless of how my body feels. I’m sitting under a beautiful tree, with a beautiful blue sky, in this beautiful place. I’ve got a view of the barn site (so I can see all the action!) and River is sleeping in the shade behind my chair. And I am surrounded by my soon-to-be family members who all love me and are all helping take care of me. Really they are already my family.

My body may have some issues, but I am actually very lucky.

Solar Power!!

Almost a year ago, APL lost his job. The company where he worked had to make a lot of cuts when the economy went downhill, and unfortunately APL's job in the IT department was one of them. 

So, on top of everything else we've been going through with my health over the past year, we've also been struggling a lot with money. It's been a particular problem this semester because I haven't been working due to my health, so there hasn't been any extra income and those student loans seem to disappear far too fast.

APL has been lucky enough to find some computer consulting jobs here and there to help us get by, but the income has been really sporadic and often insufficient to pay all the bills - particularly with my expensive medications and regular doctor's visits on top of everything else. We've been extremely fortunate to have both of our families help us get through these difficult financial times. But it still hasn't been easy. And it has certainly been an added source of stress.

Which is why I am so delighted to report that APL has just accepted a new job!! He will be the IT manager at a company that sells and installs solar panels. So he'll be helping the earth too.  ~;o)

It's about time we had some good news around here!

Helping Avoid "Arthritis" Confusion!!

After writing this post and receiving no response from the person that originally emailed me, my friend AJ suggested that I email the website directly to let them know that their marketing team was reaching out with inaccurate information. I decided she was right, and went to the "contact us" section to figure out who to email. 

Then I sent the Arthritis Foundation and the Ad Council an email commending them for their clear use of "OA" and "osteoarthritis" on the FightArthritisPain.org website, but expressing my concern about how the site was being marketed to people with blogs about RA. I said I didn't understand why the website had been so careful about focusing on OA and yet the marketing team was obviously emailing anyone with the word "arthritis" in their blog. I also expressed my concern that this type of advertizing would only perpetuate the confusion over what "arthritis" means.

I honestly didn't except a response. 

Which is why I was so excited this morning to see, not only a response, but an extremely positive one!! The email actually thanked me for contacting them and apologized that no one had replied to my first inquiries. Then it said:

You make some great points about the differences in the diseases and about making sure we are clear about the focus of the campaign both in our marketing approach and in who we market to. As you point out, osteoarthritis and rheumatoid arthritis are different diseases that, for the most part, target different demographics. We have subsequently reviewed our marketing approach and will only be reaching out to those bloggers who have osteoarthritis-specific blogs, general health and wellness blogs, or cover other related and appropriate topics.

Wow!! They have reviewed and altered their marketing approach based on my email? Awesome!! I'm really glad to have been able to make at least this small difference in making sure the confusion about "arthritis" doesn't get perpetuated, because I think that is really important - especially for those of us dealing with RA.

The email also included some RA-specific resources from the Arthritis Foundation. Seeing as I already ought to be studying instead of writing this blog post (grr....) I'm not going to (try not to) check out these resources until after my last final next week. But, in case any of you want to check them out now, here they are:

• RA Alliance
• RA Connect
• RA Discussion Boards

"O" and "R" Are Not The Same

About a week ago, I got an email from someone at YouCast Corporation. As far as I can tell, YouCast is a social media company that is helping the Arthritis Foundation promote their new website. The email they sent me had the subject: "May is National Arthritis Month - PSA Campaign from Arthritis Foundation/Ad Council." Sounded pretty interesting....

Here is how the email started:

Dear Mariah,

I wanted to say that I appreciate what you do, sharing your journey of having RA. I love your tagline: I have RA. It doesn't have me. You are an inspiration.

Wow. How nice, I thought. The email then continued:

I wanted to share a new PSA campaign with you, Fight Arthritis Pain. It encourages everyone - especially those with arthritis - to simply move for better health.

Cool. I'm certainly all for "fighting" arthritis pain. Arthritis pain sucks. And I have been trying to get more active lately. Let's see what the Arthritis Foundation has to say about that.

The email then continued by encouraging me to use this blog as a forum for spreading the word about about their new campaign. But when I went to their website to check it out, it turned out that the website was almost entirely focused on osteoarthritis (OA). On the whole website I saw only two passing references to rheumatoid arthritis (RA), and nothing on the website clarified at all whether the suggestions they were making about OA are also useful to RA patients.

Now, I'm not trying to downplay OA at all.  Like I said, arthritis pain - any arthritis pain - sucks a lot and I am all for fighting it. But I do think it has to be acknowledged that OA and RA have different causes and thus they may need to be addressed in slightly different ways. For example, I'm not convinced that exercise is always the best option for someone with RA. Not during a "flare" anyhow.  I have certainly done that in the past and it has made things worse, not better.

Interestingly, however, I think whoever is behind the actual FightArthritisPain.org website seems to be aware of this issue, because the website itself is extremely careful about using the phrase "OA" or "osteoarthritis." Even the video clip says "osteo-arthritis."And, as far as I can tell, they never use the confusing phrase "arthritis" alone. 

But somewhere along the line the difference between OA and RA got totally lost. From what I can tell, the advertizing was being targeted at me simply because I have the word "arthritis" in my blog. And even though it looked like the person from the ad firm had actually looked at my website - they even typed the word "RA" in the message they sent me - they obviously didn't understand that the product they are marketing is targeted at people with OA, not necessarily RA. 

In response, I sent them the following message:

Thank you for your email. I am actually very interested in getting involved in arthritis education and outreach on my blog. I'm also in the process of trying to figure out - for myself! - how to be a bit more active. And I am certainly interested in fighting arthritis pain.

However, the materials that you have sent me - the video, the website, and all the related resources - are all talking about osteoarthritis (OA). I have - and my readers have or are interested in - rheumatoid arthritis (RA). My joints aren't aching from age, wear and tear, obesity, or injury. I was extremely active and only 25 years old when my RA hit and my body shut down. RA is an autoimmune condition. OA is not.

I think one thing that makes RA particularly difficult to deal with - particularly for a younger person who "looks healthy" - is the confusion over what "arthritis" means. Sometimes, when I tell people I have rheumatoid arthritis, they respond with "oh, I have a little arthritis in my knee." But it isn't the same thing. And promoting "movement as the solution to arthritis" without clearly differentiating the different types of arthritis only perpetuates this confusion.

I see only two passing references to RA on fightarthritispain.org. Nothing really clarifies what RA is or whether the suggestions about OA are also useful to RA patients. While the resulting joint pain may be similar, the causes are fundamentally different, thus I don't think that solutions to OA are necessarily solutions to RA. While movement probably/usually helps with RA, I'm not convinced that is always the case.

If you have some materials that are more specifically about RA, or at least differentiate between the different types of arthritis, I would be more than happy to post links to those on my blog. But this information seems pretty obviously directed at OA, so I'm not really sure why I would write about it on my blog about RA,

Thanks.

~Mariah~

That was six days ago. I've had no response at all, so I guess that gave me a reason to write about it. It boggles my mind that the people who made the website were obviously clear of the difference between OA and RA - and even went out of their way to always use the phrase OA to make it clear. But somehow the people who are advertizing the website think OA and RA are the same thing? That makes no sense at all to me. 

Focus

Last Wednesday, I found myself sitting it yet another three-hour long exhausting policy seminar for which I hadn't done the reading because I have no interest in the material. I was passing the time by thinking about how I would finish all the requirement's for my master's thesis next semester when I made a very important discovery:

I have completely lost my focus.

Before getting diagnosed with RA, I started this dual degree graduate program - for a law degree and a master's in environmental policy - with a purpose: the issues fascinated me, I had enthusiasm for finding answers to complicated problems, and I had at least a vauge idea of where I wanted to end up when the whole "graduate school" thing was over. 

I have no idea what I'm doing anymore. 

While I still think environmental issues are important, no particular issue grabs my attention anymore. I couldn't think of a single topic that I'd like to spend six months researching - or even that I could bear to spend six months researching. I still think the world needs to find answers to complicated issues, but I'm not certain if I should be the one finding them. And I have zero idea what kind of job I'd like to end up with when I finally muscle through these degrees. If it pays the bills, I'm not sure I care anymore.

I know this is partly (mostly?) exhaustion talking. I know I'm tired from a long  four years of law school, the past two of which I've done while trying to get my RA under control at the same time. I know I'll think more clearly when finals are over and I've had some time to recover. So I'm not making any decisions any time soon. 

But, lately, I can't stop myself from thinking. Or crying, actually. And the only reason I can come up with for why I am still "doing this" is because I'm stubborn. Because I already put in most of the work so I might as well finish it, no matter how miserable it makes me. It will be "worth it" somehow. That's what everyone else says too. "You're almost done." "You might as well finish." "You'll feel better soon." "It will be worth it in the end."

But I'm not sure a Masters in Stubborn is that good for my health. Or my sanity.

I Think I'll Go For A Jog Outside?

A few blocks from our house there is a lake that has a paved walking path all the way around it. I'm pretty bad at estimating, but to go all the way around the lake is probably less than a mile. But it is a beautiful location, surrounded by a park, budding trees, and a fantastic view of the Flatirons. Aside from the goose poo that is all over the grass this time of year, it is an ideal place to go walking.

We've been taking River walking there lately because she gets twice as much exercise when we let her jump in the lake after a stick or a ball. Pros? She's nearly impossible to wear out, so we need all the help we can get!  She behaves better when she gets exercise. Cons? She smells like dirty lake. And then the goose poo in the grass sticks to her more when she rolls in it. (Not going to lie: we still let her on our bed sometimes.) But she just looks so unbelievably happy splashing through the lake after the ball, like nothing better in the world ever happened to her, that I just can't resist. It makes me happy to watch her.

In any event, I don't know if it was the fresh air, the gorgeous day, or the the fact that we were both wearing practically unused running shoes, but today APL and I decided to jog halfway around the lake. I'll repeat that: jog. Cons? It hurt my bad knee and both of my hips. I got tired pretty fast. Pros? Even though it hurt some joints, it somehow also felt good too. I think maybe it also made me feel more energized and focused this afternoon. 

Halfway around the lake isn't very far, but at least I jogged at all!! Maybe I'll try again tomorrow. But don't hold me to it.

Ditto

I was just considering writing a post wondering what on earth I was thinking when I decided that law school was a good idea. Then I realized I already wrote that exact same post when I was studying for finals last semester!!! Ha ha ha! (Funny laugh? Or crazy laugh? You be the judge.)

So: ditto.