How to Manage Rheumatoid Arthritis and Stress

Although researchers still don’t fully understand the precise connection, a 2010 review of 16 studies published in the journal Arthritis Research & Therapy concluded that there is enough evidence to support the belief that stress likely plays a role in triggering RA flares or worsening RA symptoms. This is certainly something I can confirm from personal experience!

Being stressed seems to trigger an endless cycle: stress makes you feel crummy, which generates additional stress, which only makes you feel worse. For this reason, it is especially important that people living with RA have tools for dealing with stress.

Read more at NewLifeOutlook RA!

Product Review: Aromafloria Muscle Soak Collection & Inhalation Beads

I have been given these products as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. As stated in my product review policy, my reviews will always be honest.

For thousands of years, essential oils and botanical extracts have been used to promote well-being through aromatherapy. I have to admit that I've always been a little bit skeptical, particularly because strong scents usually give me quite a headache! But when I was given the opportunity to review some of Aromafloria's product, I saw that they had a "muscle soak" line that was intended to soothe sore muscles, ease tension, and leave you energized. Several of these products were mineral bath salts - and Epsom salt soaks have become an important part of my pain management routine - so I decided to give them a try.

Aromafloria generously sent me the following products: 

- Muscle Soak Ocean Mineral Bath Salts

- Muscle Soak Foaming Bubble Bath

- Muscle Soak Sugar Salt Glow Body Scrub

- Muscle Soak Bath & Body Massage Oil

- Aromatherapy Sleep Ease Inhalation Beads

- Aromatherapy Sinus Help Inhalation Beads

The Muscle Soak products include essential oils of eucalyptus, peppermint, and lemongrass - which are all scents that I enjoy in small amounts! I was pleasantly surprised to discover that the aroma of the Muscle Soak products was actually quite mild and pleasant - and did not cause any sort of headache for me. Eucalyptus oil is supposed to stimulate the mind, aid concentration, and relieve muscle and joint pain. Peppermint oil is supposed to create a cool, tingling sensation on the skin and have a calming effect on the body, which can also relieve sore muscles. Lemongrass is supposed to energize and tone the skin. My favorite products in the Muscle Soak line were the Mineral Bath Salts and the Bath & Body Massage Oil. 

The Mineral Bath Salts work similar to Epsom salts in that the minerals are absorbed through your skin into your body to help sedate the nervous system and relieve stress - only these salts had the added benefit of the essential oils and pleasant scent. They gave the water a slightly green tinge, but it wasn't unpleasant. And although this may sound strange coming from someone who started out this review by saying that I didn't like strong scents, I honestly wish the scent of these bath salts had been just a little bit stronger. I really like the way eucalyptus smells and I would have liked to have been able to inhale just a bit more of that while relaxing in the tub. But, overall, the Mineral Bath Salts made for a very plesant bath and a nice, relaxing treat.

The Massage Oil is created with special skin nourishing components that are absorbed quickly, and I must say that one of the things I liked best about it was how quickly it absorbed into my skin. The oil was just slippery enough for a nice massage, but didn't leave me feeling like I had rolled in olive oil. In fact, I think it made my skin feel quite soft afterwards. In this case I also wish that the eucalyptus scent might have been just a bit stronger. Also, with the peppermint oil I expected to feel a slight tingling or "icy hot" effect, but I didn't experience anything like that. So, other than to provide a mild, pleasant scent, I'm not positive about the benefits of the essential oils. But on the whole I did really like the quality of the massage oil.

I found the idea of the inhalation beads to be a bit bizarre, to be perfectly honest. The little beads are infused with essential oils, you put a few in a little mesh bag, and then you hold the pouch to your nose and inhale deeply a few times. Just from opening the jar I could tell that the scent of this product was a lot stronger than the other products. I fully expected following the directions to result in a terrible headache, but I gave it a try anyways. I was surprised to discover that inhaling the beads did not trigger a headache - and I found myself wanting to smell them again! It was strangely sort of satisfying to inhale the scent deeply. I ended up having a terrible night sleep after trying the Sleep Ease Inhalation Beads, but that may have been due to other factors and I am actually curious to experiment with the beads a bit more.

I am also impressed by the company's environmentally friendly policies. All the products are manufactured in a USDA Certified Organic facility that is 100% wind powered, and ingredients are sourced from fair trade markets and grown by sustainable growers.  So all in all, I had a lot of fun reviewing these products and look forward to making use of them more in the future!

"Fibromyalgia Like Symptoms"

When you're a new mom, people tend to ask how you are doing a lot. More often, in fact, than they ever did when I got diagnosed with RA in the first place. The thing is, I feel like they're not really asking about me - they're actually asking about the baby. Is he sleeping? Eating? Thriving? Starting to sit up? Threatening to crawl? Is he a happy baby? And it is super easy for me to answer all of those questions by saying: yes! We're doing great! Because we are! OZL is doing awesome. He's happy, healthy, growing like a weed, almost sitting up on his own, starting to roll as a mode of transportation, starting to eat some solid foods, smiling, laughing, cooing, cuddling, loving... he's amazing and it makes me so very happy to be with him. 

But how am I doing? Because my life right now revolves so completely around taking care of OZL it has honestly been a bit difficult to separate out how I have been feeling lately. If he's doing great I feel like we're doing great. And swept up in busy days caring for OZL on my own, it actually took me a few weeks to realize that I haven't been feeling so hot.

I've been back on Enbrel for about two months now. I am certainly feeling better on it than I was off it. But it turns out I'm still not doing that awesome. It doesn't seem to be any particular joint or joints bothering me - instead I've been dealing with a lot of overall stiffness and soreness. I've been having a lot of trouble getting comfortable at night so I haven't been able to sleep through the night in weeks (even though OZL does!). Sometimes I am so sore in the morning that it's difficult for me to care for OZL on my own. I've also been having major cramping and aching in my feet, which makes it painful to walk. Which, of course, is not helping my quest to get some exercise. After quite a few nights in a row with very little sleep (where my tossing and turning also kept APL awake) I finally decided it was time to pay a visit to my rheumatologist.

He was not surprised to see me. He said it's not unusual to see symptoms get worse after the adrenaline of the first few months of motherhood wears off. Though he did agree that the pain/stiffness I have been dealing with lately is not how my RA usually presents (I usually have specific joints that are giving me trouble). He called what is happening now "fibromyalgia like symptoms." Instead of giving me something that would reduce my immune response more than the Enbrel already is, he suggested an anti-depressant used to treat fibromyalgia. In addition to treating depression, apparently this group of anti-depressants is also used to treat non-specific pain. I figured it was worth a try. And I really hope it works because I don't want to waste any time focusing on feeling crummy - I just want to enjoy this time with OZL!

Someone Has Sleep Issues (And It Isn't The Baby)

It's 3:17am, which is not really an unusual time for the mother of a two and half month old baby to be awake. The unusual part is that OZL is currently sleeping soundly - and has been since about 8:00pm (seven hours!!) APL is asleep next to me while I type this blog post on my phone. I'm the only idiot who is awake.

I woke up around 1:30am because (TMI alert) my boobs were full to bursting and I needed to pump. We had fed OZL some defrosted milk before he went to bed so that mommy could have a few Friday beers, so by then it had been quite a while since my boobs had last been emptied.  So I woke up and pumped. And then I lay back down to try to go back to sleep. But I couldn't. So I sat up and read my favorite mommyblog for a while to see if that would help me get sleepy. It didn't. I closed my eyes again anyway and tried to get comfortable without waking APL up. But it was no use. And here I am 2 hours of wasted baby-is-actually-asleep time later. Awake.

I know that part of the problem is that I expect OZL to wake up at any moment and expect to be fed. Seven hours may actually be one of the longest stretches he has ever slept - usually we get about five or six in a row when we first put him down at night (for which we are very grateful!) So partly I think my body/brain is protesting sleep because I don't want to have just fallen asleep when he finally does wake up - because that's no fun.

But, unfortunately, I think it's more than that. This isn't the first time I've had trouble falling back to sleep after a middle-of-the-night feeding. It happened last night too and has been happening more and more frequently. And I think I know what might be to blame: prednisone.

One of the delightful side-effects of prednisone is insomnia. I've actually experienced this particular side-effect before. And while I've been taking my dose of prednisone in the morning to try to avoid this issue, I'm having a hard time coming up with another explanation for why I've been having so much trouble falling back to sleep in the middle of the night. Because it's not like I'm not tired - I'm totally exhausted and I know I really need the sleep. I just...can't.

And it sucks. Especially because it makes my quest to continue breastfeeding that much harder. If I want to keep breastfeeding, I don't think stopping - or even reducing - the prednisone is an option. I'm fairly certain it's the only thing keeping my joints moderately functional, and even with the prednisone I can still feel the pain slowly getting worse. And while in the past I used a sleep aid to deal with this particular side effect, that isn't really an option right now - both because I am breastfeeding and because I need to be able to actually wake up when OZL needs me. Don't operate vehicles or take care of infants as an ambien-induced zombie.

So I'm not sure what to do other than keep trying to sleep I guess. It's now 3:48am and OZL and APL are still asleep. Hopefully I'll be lucky enough to join them soon.

Morning Stiffness

For the past three(ish) weeks, I've been waking up every single morning feeling like I have absolutely been run over by a truck. Multiple times. Or maybe like my body is filled with rocks. Or possibly both. It's a very frustrating way to start the day.

I'm sure the extra weight and my big belly and the tiny person taking over my insides all play a role in this soreness. Pregnancy, as I have discovered, takes more of a toll on your body than I ever expected.

But, try as I might, I just can't help thinking about how eerily familiar all morning stiffness feels, especially combined with the last few weeks of hip and hand pain. I can't help thinking about days before my diagnosis, when I could barely drag myself out of bed and I had no idea why. Or about all those days after my diagnosis, when I could barely drag myself out of bed and it didn't make it any easier to know why.

I'm really trying not think about the fact that it seems very much like my RA is on its way back - and may already be here. But, honestly, that is so much easier said than done. Especially in the morning when I wake up feeling totally beat up instead of at all rested. When I wonder how on earth I will get through the day and the tiniest tasks - like deciding what to make for dinner - seem almost impossible.

I'm also trying to ignore my worries about how I will ever care for a small human if I feel anything like this after he arrives, but that is also easier said than done.

I'm certain that I will get through all this - and I am so grateful to have APL always by my side to help me when I need it. And I'm positive this will all be worth it in the end. It's just that....some days everything seems a whole lot harder than it ought to be.

Secret Post #18: Continued Mostly Morning Sickness

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

 This Post Written November 4, 2011

TMI Warning: This post contains details about pregnancy that you may consider to be too much information. Don't say I didn't warn you!

There's nothing like starting off your morning with a little bit of dry heaving. Ok, make that a lot of dry heaving. For the life of me I don't understand how I can feel like barfing when there is obviously nothing in my stomach to barf.

This week has been REALLY ROUGH. Constant nausea - and I'm not exaggerating when I say constant. There is currently zero food that is appealing to me. I've been force-feeding myself saltines and chicken soup and whatever else I think I might be able to (try to) keep down. Nasty headaches - and there's nothing safe to take to relieve them. Extreme boob and nipple pain - to the point where I've been sleeping in a sports bra. And while fatigue isn't exactly a new symptom in my life, combined with these other symptoms it has actually taken quite a toll on me. I feel like I have been hit by a truck - a REALLY BIG TRUCK - this pregnancy fatigue feels way worse than my RA fatigue ever was (though to be fair I am most likely dealing with pregnancy fatigue on top of RA fatigue). I really just want to lay on the couch and watch stupid movies all day, which, given my current lack of a job would be totally possible if I didn't have to pee every 15 minutes! Some nights the constant peeing keeps me from sleeping too.

Biology lesson: (a.k.a. Things No One Tells You!) It's common knowledge that pregnant women have to pee all the time, but I always thought that was just later on in the pregnancy when the baby is resting on your bladder. But no! The constant peeing starts right away - for me it was almost immediately after conception - because your blood volume is increasing to build the placenta.

I must admit that I honestly thought getting pregnant was going to be the hard part. Turns out being pregnant is way harder than getting pregnant ever was. (And, I assume we will soon discover that raising a baby is even harder than being pregnant).

As someone who functions on a regular basis while not feeling that great, I've actually been quite surprised about how extremely awful I have been feeling this week. And, more than that, by how incapacitated the not feeling good has made me. I have been entirely useless this week - accomplishing absolutely nothing (other than, you know, the baby I'm growing inside of me). I am so grateful that I don't have a job right now and that APL has been helping with things around the house - because I don't know how I would be functioning right now if I actually had responsibilities. How do women do it?!?! Go to work? Care for other children? Make meals when the sight of food makes you want to die? They are seriously amazing and I salute them.

Luckily, there is good news in all this horribleness: my doctor told me that the more early symptoms I experience the less likely I am to have a miscarriage. And, judging by how the symptoms have totally beat me up this week I'd say I'm carrying one strong baby! So, when I'm curled up on the floor next to the toilet, I try to remind myself that it's actually a good thing!! And (dear god knock on wood!) the morning sickness should only last for a few more weeks.

However, though the pregnancy seems to be progressing well, I have to admit that I'm still not sure exactly what my RA is doing. I've obviously been tired and sore - but is that from the RA or from the pregnancy? Is that feeling going to stick around when the morning sickness ends? (oh god, let the morning sickness end, knock on all the wood!)

And I did have a little bit of cause for concern at pilates last week. My instructor helped me figure out that what I thought was just general low back pain was actually coming from trouble with my SI joint (the joint in your pelvis). This makes me nervous because (1) I've never had trouble with my SI joint before and (2) clearly I'm going to be needing to use my pelvis in the upcoming months! I have pilates again today, so I'm looking forward to seeing if my instructor sees any improvement in that joint - though the pain hasn't seemed to change much over the course of the week. Then again, I've been so generally miserable that I think I need an outside opinion at this point.

I just have to keep reminding myself that whatever I end up having to go through - and whether my RA goes into remission or attacks me for the next 7 months - it will all be worth it so APL and I can start our family.

Dance Monkey Dance

Sometimes, I take my Ambien and for some reason I still can't fall asleep. At the time I feel totally alert and wide awake - and then frustrated that I'm not able to fall asleep. Rather than tossing and turning in bed and waking poor APL up (because he has to get up early for work) I usually try to find some way to distract myself until I feel like I can sleep. 

But sometimes when I wake up the next morning, I find that I'm  totally surprised by what I did the night  before. Occasionally APL and I will have a whole conversation (that he obviously thought I was alert enough to be having at the time) that I won't remember at all in the morning. Sometimes I'll open my book to my bookmark the next night and not remember reading the last two or three chapters. I never got blackout drunk in college (or at any other time, for that matter) but I imagine it feels something like this: apparently I did things that I can't really remember doing. 

This morning when I sat down to check my email, I noticed a bookmark in my toolbar labeled "Dance Monkey."I had no idea what it was, but I was amused that I was obviously alert enough at the time to think "hey, this is a very useful page! I'll add it to my toolbar so I can access it easily in the future, because obviously I will need to access it often!" It wasn't until I checked out the link that I vaguely remembered playing this game last night and getting frustrated that I couldn't pass level 2!

Conclusions:

(1) Maybe I had better add Mail Goggles to my email before I Ambien-email some important person with what I think are clear thoughts. Though, seeing as I really am functioning at the time (even APL doesn't notice a difference) I don't know if it will help...

(2) I bet, now that I'm not Ambiened out anymore, I can totally beat level 2!! (Thanks Ambien me. Way to encourage procrastination....)

Lysol Rambo Is Sad

Sadly, I never did get that lysol gun. And, though I did my very best to avoid being near sick students, they were literally everywhere. It was physically impossible for me to avoid them and go to class (or even leave the house) at the same time. And unfortunately, as predicted, my poor immune system had no chance whatsoever. After muddling through a presentation I had to give on Wednesday morning, I ditched my afternoon class, went home, dragged myself upstairs, and fell into bed. I have pretty much been there ever since. 

This makes Lysol Rambo sad. Totally should have gone rampaging with the disinfecting supersoaker.

I've been sleeping half the day and too tired to do much of anything other than move from the bed to the couch during the the other half. My entire body aches and I am so exhausted I can barely move. And my head has been aching almost constantly for several days. I'm not sure if I have a cold or the flu or just a really bad RA flare - or all of the above - but I don't think there exist words to explain how exhausted I am right now.

To make matters worse, I was so out of it this week that I totally forgot to call in a refill for my Enbrel prescription. APL called the pharmacy first thing this morning (we go to Costco now after one too many fails at student health), but they can't get it until Monday because they have to order it. So, although I'm supposed to have my injection today, I guess it will have to wait until Monday. Which will probably mess me up even more. Though I guess if I am actually infected by some stupid sick student germs I probably shouldn't be injecting immune suppressants into my system today anyhow.

Now that I am upright and at my desk, I will attempt to work on the presentation I have to give on Tuesday. ::sigh:: When this semester ends, I swear I'm literally going to do nothing for a month.

Many Much Snooze = Give Up?

I've been having a lot of trouble getting out of bed lately. I've just been so tired that it's almost impossible to get myself to wake up. Then, once I finally wake myself up, it takes almost as long to convince my body to move. Which sucks.

But today I discovered yet another challenge: if I hit the snooze button on my alarm clock for over two hours (told you I was having trouble) then the whole alarm turns off and resets for tomorrow. I find this problematic. If it has already taken me two hours to wake up, shouldn't I need to get up more, not less?

Or is my alarm clock telling me that it's ok to just give up and go back to bed if it's really taking me more than two hours to get up? Hmmm.....

Oxymoron

I feel like an oxymoron. (Or maybe just a moron?)

I've been having really bad pain in my legs for a few weeks - my knees and feet have been giving me a lot of trouble, and so the muscles in between feel like they are made of fire all the time. It hurts to stand. It hurts to sit. It hurts to be. APL and I are also dealing with some pretty serious financial issues. And I'm so over being a student, but I still have homework to do every day. I'm stressed out and more exhausted than I think I've ever been in my life.

But, despite my exhaustion, it takes me hours to fall asleep every single night. I guess this part makes some sense - exhaustion doesn't necessarily lead to sleep (though that feels like an oxymoron all by itself!) Every night I take medicine and vitamins specifically to help me sleep. I light a scented candle, turn on my humidifier, and relax before trying to fall asleep. It still takes hours to get to sleep.

But then, even though I can't fall asleep, apparently I can't wake up either!! Lately it has been taking me literally hours to haul myself out of bed in the morning (or afternoon, as the case may be.) Sometimes I can't make myself wake up, so I press snooze a hundred times or accidentally fall back to sleep for several more hours. Sometimes I'm awake, but I just can't make my body move out of the bed. Sometimes it's both. Today, for example, I wasn't able to make myself get out of bed until 12:45pm. I'm having trouble making it to my classes on time and my earliest class is at noon!!

The solution to this difficulty getting up seems to be to go to bed earlier, right? But I can't fall asleep!!! Hence, oxymoron. Or moron. Whichever.

::sigh:: I'm a grumpy bear today. ~;o(

The Incredible Sulk

I am not really a comic book person, but I'm beginning to wonder if my alter ego might actually be related to The Incredible Hulk (a.k.a. a giant, raging, humanoid monster). 

Today one of my classmates was complaining about how stressful it is to be training for a marathon. I wanted to grab him and shake him silly. Yesterday a friend was reasonably upset with her roommate over some dirty dishes in their sink. I wanted to smack her up the side of her head. Another friend posted about feeling a little sick in their Facebook status. I wanted to respond with many profanities.  I've actually taken out this  type of frustration on poor APL in the past.

Here's what's provoking my raging thoughts: I am actually really jealous of my friends' problems. I would be totally happy to feel sick as a dog today if there was even a remote possibility of feeling 100% better tomorrow - or even next week or next month. I would deal with horrible dirty dishes in my sink every day for the rest of my life if only it didn't hurt to wash them. Even though I have always hated running, I would make myself enjoy the stress of training for a marathon if my joints just felt well enough to do it.

I realize that these are totally irrational and unfair comparisons - between the things I deal with every day because of my RA and my healthy friends' real life problems. And I completely recognize that my friends are entitled to their own problems. I even want to hear about their frustrations and try to help, because that's what friends do.

But some days I'm dealing with a lot of joint pain, or fatigue, or I haven't been sleeping well, or the pain in a single joint is hijacking my brain, or sometimes all of the above. On those days, I can't stop myself from having my little self-centered silent rage tantrums every time my friends complain about problems I would trade mine for in a heartbeat. I still try my best to offer my support or at least just listen quietly. But I get all angry on the inside. Maybe I haven't quite dealt with the "for the rest of my life" part of the diagnosis as well as I thought I had. I feel like a four-year-old shouting IT'S JUST NOT FAIR!!

But guess what, kid: life is not fair. And you better figure out some way to deal with your feelings like a reasonable human being, because I doubt The Incredible Sulk has very many friends.

Seattle

I just returned from a fantastic week in Seattle with my sister. I love my sister, and I can't even begin to explain how much I wish we lived closer to each other so we could spend more time together. Someday I hope we can.

When I arrived in Seattle my mom was there visiting too, so we got to have several really fun (and for me much-needed!) girls' days together. We went to lunch and happy hour. We took walks. They even took me to start trying on wedding dresses! I was actually sort of nervous about it, because I am generally not very good at shopping and I was concerned about my stamina for trying on lots of complicated dresses and standing up all day. But my mom and sister did everything they could to make it easy for me and I actually surprised myself. It was really fun and exciting and made the wedding seem even more real! (Holy crap, I'm getting married!) We were also very silly and we laughed harder than I can remember laughing in a long, long time. 

Then, because we had so much fun when my sister and her boyfriend came to Boulder to visit us, APL came to Seattle for the weekend so the four of us could hang out together. We walked around Pike's Place Market and the Space Needle downtown, though that walk took a bit of a toll on me. We spent the afternoon picnicking and swimming in the lake. We watched the World Cup Finals. We drank local beer and generally just really enjoyed ourselves. The visit was too short!! And I already miss my sister!!

As always after travel, I felt really quite beat up yesterday. (Though I did go to pilates anyways!) I am worn out from having such a good and exciting week in Seattle and I know I need to rest. But for some reason I can't seem to sleep. Right now it's 6:00am and I have been awake since 3:30am.  It seems almost impossible to be so exhausted and not be able to sleep, but it's happening to me at this moment. And I'm not sure how to fix this problem, because if I sleep during the day today I won't be able to fall asleep tonight. 

But, law school is over and class for my Masters doesn't start until the end of August. I've got a research project to work on, but I don't have any immediately pending deadlines. I guess I've got some time to try to figure my sleep problem out. 

Grumpy Bear

I didn't sleep much or well at all last night, despite prescription medications that are supposed to help me with this problem. I also woke up with aches in pretty much every joint in my body, a headache, and feeling exhausted. I'm not sure if there's anything more frustrating in the world then waking up already exhausted. 

I felt so gross and grumpy this morning that I was surly at APL and then cried about it before even getting out of bed. I did manage to force myself out of bed to school, but only made it through one class before realizing that I hadn't even had energy for that. So APL picked me up and drove me home on his way to an appointment. After he left I laid on the floor and cried for 20 minutes.

Awesome start to this day/week.

At least APL understands that it's not him I'm actually upset with. And River was there to lick the tears of my face. 

And at least law school will be over soon...if you can call two weeks of classes, one presentation, one 20 page paper, and 3 three-hour exams upon which my whole grade depends "soon." Grrrr.....

What Do You Do When 12 Hours of Sleep Is Not Enough??

Yesterday I got home from class and externship meetings at about 3:30pm and announced that I wanted to go straight to bed. Immediately. 

But APL made the very logical argument that I ought to attempt to stay up a bit longer, closer to my normal bedtime, in the hopes of establishing a more normal sleep schedule and making it easier for me to get up in the morning. This made sense, so I managed to stay awake a few more hours, though needless to say I did so by watching old episodes of Little House on the Prairie rather than attacking the mountain of work I have to do at this point in the semester. And I'm pretty sure I was still in bed by about 8:30pm.

But, despite sleeping literally twelve hours (i.e. half an entire day), I still had an impossible time getting up this morning. I just couldn't get out of bed, like someone had turned the gravity up and it was next to impossible to fight against it. But seeing as my Professor was handing out the take-home midterm in class today, I had no choice but to get up. I did it somehow, though I can't explain how.

When I got home from school and getting a blood test (as usual), even earlier today at 12:30pm, I was ready to go back to bed. Maybe even more so than yesterday. But I've got a take-home midterm to complete. And reading. And research. And emails to respond to for work. Just so many things to do.

I know RA has taken away a lot of my energy, but I feel even more exhausted than usual, if that's even possible. But what on earth do you even do when twelve hours of sleep is not enough???

Better Juice Maybe?

When APL was a very little boy, he once asked his mom for juice by saying “better juice maybe?” Sometimes APL and I use that phrase to joke about things (i.e. to help deal with things) that could/should be a bit better than they currently are. Considering our camper comes from a company called “Jucy,” it seems particularly applicable here. While I still think the camper is a major upgrade from hauling a heavy pack between public transportation and hostels, we’ve had a few problems with living in the camper since my last post.

Yesterday, I spent four hours in class learning about international trade law. APL spent all afternoon taking a surfing lesson. (Obviously APL got the better deal!!) By the time we got out of our classes, we were both so exhausted that we didn’t want to do anything at all. So we decided to pick up a pizza and just relax in Matilda. However, we made the mistake of driving away from the coast and back to our campsite to relax. At dusk. It was a very bad plan.

Though APL rigged up a brilliant mosquito net inside our camper (so we can keep the windows open and not roast to death in there) there must have been a gap or hole somewhere, because while we were trying to relax we had a mild mosquito apocalypse. We found ourselves sitting inside our mosquito nets but getting our palms covered with bug guts and our net polka-dotted with blood as we killed dozens of mosquitoes. Needless to say it wasn’t at all relaxing. It was frustrating. And exhausting. And itchy.

Also, though I have been sleeping pretty well on the bed in the camper, living in the camper seems to be contributing to me not sleeping enough. The campsite is pretty crowded and noisy until around 10pm, so we’ve been getting to sleep sometime after that, which is not actually too late. But we also end up getting up pretty early – around 8am for the past couple of days. This is partly because we have all the windows open in Matilda to stay cool, so it gets really bright in there really early. But, even if we could ignore the light, it starts getting too warm at the campsite, and certainly in Matilda, around 9am. Though 10 hours may seem like enough hours of sleep, with jet lag, traveling, hours of class every day, fatigue, and dealing with swollen joints from the heat I think I simply need more. I can feel my body getting more exhausted each day. I need major catch up sleep before I get past my breaking point.

This afternoon we also saw an error light blinking on our battery-powered cooler. Considering how I’ve been feeling more exhausted each day, potential failure of our cooler pretty much gave me a panic attack because I know that I need to be able to keep up with my ENBREL injections to get through this class and enjoy this trip. We called Jucy right away and told them the problem. To which they replied: “oh, you can’t run the cooler all the time.” They insisted that they told us this when we picked up the camper. They 100% never said anything of the sort. I know, because I was paranoid about keeping the ENBREL cold so I paid close attention to the part about the cooler. They said we needed to keep it on low – not that we needed to turn it on and off. Grrr…In any event, it looks like we will have to run the cooler on intervals from now on to save the battery. Hopefully it will be insulated enough to keep my ENBREL cold. Everything should be fine, but it is enough to make me a little bit nervous. Which makes me a little more grumpy. Which makes me a little more tired.

For Christmas this year I think I’d like a shady parking spot and a cool breeze so I can take a very long nap.

Hello, Kitty!

It may be 1:00am and I may be having trouble getting to sleep again, but here's hoping that at least I don't wake up with blood on my pillow this time! Even a stupid immune system is happier with Hello Kitty! Or something.

Painsomnia

Despite my tripled dose of prednisone over the last two days my everything still hurts. A lot. Toes, ankles, shins, knees, back, elbows, wrists, fingers, and every single muscle related to those joints. It isn’t pretty.

It’s not so bad when I’m distracted – like watching a movie or hanging out with friends. I mean, it is so bad, but somehow I manage. (I mean, what's the alternative?) But I had a really hard time falling asleep last night. It took hours. I couldn’t get comfortable and the pain seemed to be literally keeping me awake. Since drugs don’t seem to be helping with the pain all that much, I guess I could have taken something to help me sleep. But I’m not thrilled with the idea of becoming dependant on drugs just to get to sleep at night.

I did finally fall asleep last night only to wake up at 4:30am to discover that my lip – which still refuses to heal – was bleeding all over the place. I got up to wash my mouth and face off and try to find some medicine to put on my lip. It was dark, and I didn’t want to wake APL, but I’m willing to bet that there’s blood all over the sheets and pillowcases that we just changed from the other day when my lip bled all over them.

When I got back into bed I lay for an hour trying to get comfortable enough to fall back to sleep again, but my attempts were fruitless. If you look at the timestamp on this post you’ll see it’s 5:30am in the morning right now.

This sucks.

P.S. I just remembered that prednisone can actually cause insomnia. So, even if the prednisone was working and taking away the pain, and the pain wasn't keeping me awake anymore, I might still be awake. Awesome.

Ten Miles With The Biggest Loser

I have a sort of embarrassing confession to make. It has two parts:

Confession Part One: I’m totally sucked in to The Biggest Loser. One night, when I was having trouble sleeping, I watched an episode of The Biggest Loser on Hulu. I know reality TV is pretty much horrible, but I got sucked in. Now I watch The Biggest Loser every week.

Confession Part Two: Today The Biggest Loser actually inspired me to exercise. Because of the snow and my headache, I haven’t been able to come up with the energy to get myself back to the pool. But today, while I was watching The Biggest Loser, I couldn’t help thinking: you know, if someone who is over 200 pounds can run a half marathon and tow a car half a mile, then me and my creaky joints and my headache can certainly ride an exercise bike for a little bit.

So, while I was watching TV, my headache and I rode the stationary bike for 45 minutes. Although I took breaks and only rode for 15 minutes at a time, I still rode about 10 miles total while I watched The Biggest Loser. And that is certainly better than doing nothing at all!

Sleep Schedule Fail

On Tuesday I called the doctor to see how I ought to be handling a cold with my compromised immune system. They didn’t call back. On Wednesday I called again. By the time they called me back on Wednesday night and told me I should come in, I couldn’t get an appointment until Thursday afternoon. When I finally went in the doctor did a strep test and a CBC (complete blood count) and determined that it really was nothing more than the common cold.

But having even just the common cold on top of the aches, pains and fatigue of RA has really sucked and, I think, brought me to my lowest point yet over the last delightful ten months. I feel just awful – both physically and mentally. My whole body hurts, I have literally zero energy, and I’ve been pretty bummed out.

As a result I’ve been sleeping a lot. And we’re talking college-style sleep-through-half-the-day sleeping. Only in college I’d sleep through the whole morning because I stayed up until 3 or 4 am the night before. Now I’m going to bed around 11:00pm and still sleeping until after noon. Over the weekend I slept until after 1:00pm both days.

APL and I decided that I might start feeling a little bit better if I could get myself on a more regular sleep schedule. So we decided to set me an alarm this morning. Last night we went to bed after 1:00am, because APL went to a concert and I stayed up watching a movie and waiting for him to get home. (Surprise, surprise I didn’t feel well enough to go to the concert with him.) So we decided to start slow. We set my alarm this morning for 11:00am.

When it went off, I proceeded to hit snooze for an hour. At noon, I looked over at the alarm and decided to get up. So I turned the alarm off. Then next thing I knew it was 2:15pm and I was still in bed. I’m blaming it on the combination of the dose of methotrexate and NyQuil I took last night, but man. Talk about failing in my attempt to get on a normal sleep schedule.

The sad thing is that it doesn’t really matter that I slept most of the day away, because I didn’t have any plans anyhow. I guess I can always try to get up at a reasonable hour again tomorrow.

River

Some days, I think the hardest part about having RA is the simple act of getting out of bed in the morning.

The methotrexate seems to make me really tied for a couple of days after I take it, no matter how much I sleep. (Maybe too tired. I think I’m going to have to ask the rheumatologist about that on my next visit…) But general fatigue is similar too – I can’t seem to sleep it away no matter how much I try. Thankfully, I haven’t had an anxiety dream (like this or this or these) in a long while. But, honestly, I still never wake up feeling completely rested. I always wake up feeling tired. Which sucks. A lot.

Morning is also the time when my joints hurt the most. I’m stiff from sleeping and sometimes I get cramps in my legs in the middle of the night. Usually, I feel a lot better after I get up and get moving, but actually forcing through the stiffness to get out of bed sometimes takes more effort than I feel like I have.

That’s where my River comes in. Our sweet little puppy. (Ok, ok…River is actually two years old. But just let me be sappy because she’ll always be a puppy in my heart, ok?) River is a lab/border collie mix. When APL and I got river she was just eight weeks old and the cutest floppy black puppy you’ve ever seen. I fell so instantly in love with her that I literally cried when they told us we could take her home. At the time I was in the middle of my first year of law school, which is basically as stressful and horrible as rumored. River was my lifesaver, keeping me afloat through my second semester exhaustion. Every day I spent a much-needed hour of relaxation at the dog park, watching River play with the other dogs. Every evening after I finished my reading we would roll around on the floor and play together. She kept me sane.

These days, River helps me in other ways. APL has to be at work at 8:00am, which is way earlier than I am able to pull my aching bones out of bed in the morning. Every morning when he gets up to get in the shower, he lets River into our bedroom. She jumps up on the bed and falls back to sleep, usually curled up against the back of my legs.

Usually between 9:00am and 10:00am, River decides that it’s time for me to get up and sets about waking me up. She stretches and makes her adorable grumbling noises. Then she’ll decide how she feels like waking me up today. Some days she lays down right on top of me and wiggles. Some days I wake to her giving me face kisses. This morning she practically sat on my head and sent her tail wagging right on my head. No matter how she does it, I always wake up smiling.

Once I open my eyes I always reward her with petting and scratching. She’ll roll alongside me and I’ll rub her belly (including the bald spot she has on her chest from commando crawling. I can’t even begin to describe how hilarious it is when she does that.) She’ll give me kisses on my face and my hands. She’ll yawn and stretch some more, encouraging me to do the same. Then, when she thinks it’s time, she’ll jump off the bed and I’ll follow suit. We go downstairs and make a cup of tea. And every morning I feel a little more grateful to have such a loyal friend who takes care of me every single day.

Some days, I don’t know how I’d get out of bed without her. It’s totally worth a little dirt in the bed!