Gluten-Free!

I haven’t eaten any gluten in two weeks. And after reading that sentence you’re probably asking yourself, what the heck is gluten?

Let’s begin at the beginning. After I met the massage therapist who said she controlled her RA with diet, I started looking into what kinds of diets are supposed to help with RA. There are all kinds of theories out there: vegetarian, vegan, gluten-free, casein-free, etc. I couldn’t decide where to even start. So, amidst the chaos of my last Remicade infusion, I asked the rheumatologist what he thought about the diet theories. He said that he had seen the most results on a gluten-free diet. So I started looking into that.

As it turns out, pretty much every medical condition or symptom I have ever dealt with in my life is on the list of symptoms for gluten-sensitivity. To name a few:
• Fatigue/weakness
• Vitamin and/or mineral deficiencies
• Headaches, including migraines
• Joint/bone pain (Hello, RA?)
• Irritability
• “Fuzzy brain” or inability to concentrate
• Hashimoto’s disease (my other autoimmune disease!)
• Bruising easily
• Muscle cramping
• Swelling and inflammation

Now, I am totally aware that if you read a list of symptoms you can convince yourself you have any disease in the world. (In college one of my friends went on the internet and convinced herself she had toxic shock syndrome. It took us hours to talk her out of it) But still, I have to admit that there’s something uncanny about finding pretty much every health problem I have ever had on a list of a single syndrome. And if the rheumatologist says it could help with my RA, it seems worth a try to me.

So: two weeks, no gluten. And what is gluten? Gluten is a mixture of proteins found in wheat, rye, and barley. The obvious foods that contain gluten are those with flour in them: bagels, bread, most baked goods, crackers, pasta, pizza, pretzels, etc.

But gluten is also found in slightly less expected things, like: beer, licorice, and soy sauce. In fact, did you know that wheat is the second ingredient in soy sauce? It comes after water and before soy! So, the bad news is that gluten is in almost everything. But the good news is that there are a lot of gluten-free alternatives on the market today. Especially in a hippie town like Boulder! So I don’t really have to go without these food items. I just have to replace them with versions made with potato or rice flour. And my local supermarket has everything labeled with the cute little “no gluten” symbol. It’s awesome.

And, of course, the question that everyone wants to know the answer to (both with this and with my RA drugs): is it helping?

Honestly? I can’t say. I am in the middle of law exams. I took the first one last Monday (eight page fact pattern for a two credit class!!) and I have another this Monday followed by a third on Thursday. And since I’ve been struggling with my work all semester I have a lot of catching up to do before those exams. So I am in a state of so much mental and emotional stress that I really can’t properly evaluate how the changes in my diet are affecting me. So ask me again in another two weeks.

But, I can say two good things. First: I feel like my appetite has improved a bit. I used to feel pretty lethargic and I would just eat because someone reminded me it was time for a meal. But now I find myself hungry. Which is nice.

And, second, APL and RK have been total rock stars of support with my new diet enterprise. They’ve researched gluten-free options, brought me gluten-free snacks to study with, and cooked me delicious gluten-free meals. Tortilla soup and corn tortilla quesadillas. Rice and chicken curry. Chicken cordon blue. Chicken katsu made with rice cearal. Ok, a lot of chicken! But, the point is, the meals have been great and I don’t really miss the gluten at all!

APL and RK are the best. I’d never survive without them. APL even found a local restaurant that labels the gluten-free options on its menu! We’re going there after my exam on Monday, which is also our six-year anniversary (SIX?!?!). I’m really grateful that APL has been so enthusiastic about helping me figure out if this diet is for me. I think he likes being able to help me. And I’m down with that too.

On Thin Ice

Recently, I’ve been struggling. All semester I put off reading and note taking hoping that maybe next week I would feel better enough to tackle it. But that “better” week never came. And now there’s a deadline. There’s literally only a couple of days until I’ll be faced with three hour law exams on subjects I’ve only barely managed to pay attention to this semester.

And doing the work now isn’t easy either. There isn’t a lot of time and I don’t feel much better. I feel like my motivation has been on thin ice lately, because as soon as I finish studying for one class I don’t get to take a break. I immediately have to start studying for the next class. So, despite the impending doom of the exams, I’m still finding it hard to concentrate. Or care.

But today I got a reminder that (a) there is more to life than law school and (b) I am still a very capable person. And this reminder literally came in the form of thin ice.

I was leaving the dog park this afternoon when I saw another girl calling after her 10-month-old puppy, Scarlet. There is a lake next to our dog park, and Scarlet had run out on to the ice, chasing some geese. But as she got father away from shore, the ice got thinner and eventually she fell through. Then Scarlet was struggling to get back up on the ice, but she couldn’t do it. We tried to get her to swim to a spot where the ice was thicker, but she still couldn’t get back up. If someone didn’t go in after her, Scarlet was going to drown.

So Scarlet’s mommy started in after her, but the ice cracked under her feet immediately. I told her that she should lie down on her stomach and wriggle out to her and she followed my instructions. She made it almost all the way to the struggling puppy, but when she reached out to her the weight on the thin ice was too much and she fell through too. Then she couldn’t get back up on the ice either, and with her chest in the water and the puppy still struggling, she started to panic.

Without a second thought I took my jacket off and went in after them both. Honestly I am amazed at how calm I was. I guess my ancient lifeguard skills took over. I could see that she was panicking but also that she could reach the lake bottom. She wasn’t drowning. So I told her it was going to be ok. I told her I would break a path through the ice so that we could all get out. And I immediately stomped into the freezing lake, breaking through about ten feet of ice to get out to her and her puppy.

I grabbed Scarlet’s collar and pulled her past her mommy and around me, so that she could swim back to shore through the path I had made. Then I grabbed her mommy by the hand, told her again that it would be ok, and hauled us both out of the freezing lake. We all hurried to our cars to get warm and get home. Scarlet’s mommy thanked me for saving their lives.

There may be some things that I physically can’t do anymore, and there may be some times that I feel like less than myself, but today I remembered that I am still me. I am still good in an emergency. I am still capable of keeping a clear head and doing what needs to be done. And while I wouldn’t wish a swim in a freezing lake on anyone, I’m really glad I was there today.

Grouchy

I am exhausted (cryiared, more accurately). My jaw still hurts a lot and it is making my ears and head and face hurt and my eyes swim and my head too fuzzy to concentrate. (Though the rheumatologist did prescribe me a muscle relaxant to take before bed, so maybe that will help.) My toes hurt. That makes my legs hurt. Last night my feet cramped so badly it brought me to tears. I’ve been in class all day, but I've had very little luck paying attention. I just turned in a 12-page paper that was supposed to be 15-20 pages. Oops. I have three impending law exams and I’ve barely started outlining for any of them. And APL is sick and I don’t have the energy to take care of him and he doesn’t have the energy to take care of me. Plus, because of my weakened immune system, we have to sleep in separate rooms while he’s sick and that makes me feel lonely too.

All of this makes me grouchy. I think I need a hug. But not one that’s going to give me the flu. ;o(

Pain in the Jaw

About a week ago, my jaw started hurting. I don’t know if I am clenching my teeth in my sleep (anxiety dreams much?) or if the pain is related to my RA (a jaw is a joint, right?) or both. But I do know that my jaw hurts. A lot. And it is making me miserable.

My whole head and face hurts. My ears hurt. I can’t focus. My eyes seem to swim around when I try. It hurts to eat. The headache the jaw pain is inducing is almost unbearable (which says a lot, coming from someone who has suffered from migraines for the last ten years.) I can’t concentrate. And, the worst part is, no amount of pain medication seems to do much about the jaw pain. I called the rheumatologist this morning to ask what the hell I am supposed to do about this, but I haven’t heard back from him yet.

In the meantime: I’m supposed to prepare for law exams how, exactly?

I Am Thankful That You Make Me Tea

I am so thankful for APL. I am thankful that he opens jars for me. I am thankful that he makes dinner when I’m not feeling well. I am thankful that he makes me laugh even when I feel like I can’t. I am thankful that he’s patient with me when I take out my emotions on him. I am thankful that it would take me all day to list everything APL does that I am thankful for.

This year for Thanksgiving I am visiting my family in Los Angeles, but unfortunately APL couldn’t come with me. But even though we can’t be together today, I wanted him to know exactly how thankful I am for everything he does for me every day. And I didn’t want him to feel alone in our home without me. So I took a stack of post-it notes and wrote things that I am thankful for and posted them all over our house.

I hope he found them all!

How To Not Cry Over $3,000 Spilled Milk

On Thursday morning, I arrived at the hospital at 8:45 a.m. for my third dose of Remicade. I checked in, they led me to my seat, and they inserted the IV near my left wrist. Then my rheumatologist came in, pulled the curtain around my chair, and we talked about the pain in my feet, my anxiety dreams, my exhaustion, and how I was starting to get discouraged with the whole process of searching for a treatment. We talked about different ideas for getting me feeling well enough to get through finals, he told me what he thought about different RA diet choices, he wrote me a couple of prescriptions, we discussed when to book my next appointments, and then he left me to finish my Remicade infusion.

This time, instead of bringing moms, magazines, or movies, I brought my regulation of toxic substances and hazardous wastes casebook. It’s a thriller, I swear. But I have some reading to catch up on in that class so I thought if I was feeling up to it I might as well try to get some of it done while I was stuck in that chair anyways. So I perused pesticide regulation statutes and hazardous waste cases while attached to the IV with the blood pressure monitor squeezing away every half hour.

Around 11:00 a.m. one of the nurses came by to check on me and her foot squeaked on the floor as she walked by me, like the floor was wet. Curiously, she pulled back the curtain from around my chair only to discover a big puddle of clear liquid on the floor that had been concealed by the curtain. She asked me if I had spilled something. I said no. Both of our eyes quickly darted up from the puddle on the floor to the nearly empty IV bag of Remicade.

It turns out that somehow, during the first two hours that I had been sitting there, the IV machine had primarily been dripping Remicade on to the floor instead of into my veins. The curtain around my chair had concealed the puddle. The nurses were flabbergasted. They said nothing like this had ever happened. They couldn’t figure out why the alarm on the IV pump hadn’t gone off. They couldn’t figure out what to do about the expensive medicine all over the floor (remember, my 20% co-insurance is $600 per infusion.) And so I sat there, attached to an IV of nothing, while they tried to figure out what to do next.

But we realized that there was really only one thing to do. We had to start the infusion all over again. As I looked at the puddle of Remicade on the floor, I realized that I was going to be stuck with the IV for another two or three hours. I also realized that I could get upset about it, and be miserable for two or three hours, or I could cut off that stress response and just try to relax. Take things as they were. Move on. While the nurses flurried around I sat in the chair and took a few deep breaths. Then I smiled and told them I was ok, that I understand that stuff happens, and that I hadn’t really wanted to go to class that afternoon anyways.

The nurse who had hooked up the IV in the first place felt really, really bad about the whole thing, since it was most likely a mistake on her part that had caused the leak. She apologized about 300 times and assured me that I wouldn’t be charged for the first batch of Remicade that was being sopped up with a towel. Since the infusion center only keeps the amount of medicine they are planning to use that day, it took a little while to get a new batch of Remicade. When all was said and done it was noon by the time we started take two of Remicade dose three.

The nurse who felt really bad offered to buy me some lunch, so I took her up on it, partly to make her feel better and also so I would make it through the second treatment without passing out. She brought me a delicious tuna salad sandwich. After eating, I was pretty exhausted, so I gave up on my toxics casebook. But luckily I had my laptop and managed to get on to a bit of a wireless network, so I entertained myself for the remaining two hours.

It was 2:45 p.m. by the time I left the hospital. Dose three took a total of six hours. I was completely exhausted. And I have a huge bruise on my left wrist from having the IV in for so long. But, in the end, I got my medicine and I was proud of myself that I got through the whole mess without getting upset. And the nurses in the infusion center will probably be extra nice to me from now on.

We Led the Ligers to the Village

I feel like my RA blog might be incomplete without my most recent gem of an anxiety dream. It sounds pretty hilarious now, but it really wasn’t when I dreamt it:

APL and I were in the wilderness somewhere – it looked like Africa. For some reason we had to drive somewhere in an open-air jeep. I think I might have also been pregnant? We were given specific instructions on what to do if we met any dangerous wildlife: we were supposed to stop, wait until they lost interest in us, and then slowly back away and give them a really wide berth.

So we were driving along through the wilderness when we rounded a corner to see three enormous animals. They weren’t quite lions and they quite weren’t tigers – they were something in between. I’m going to go with ligers. And they were huge.

For some reason, being so close to these ligers in an open-air jeep with a pregnant me really upset APL. So instead of following the instructions he did a crazy loud U-turn, which alerted all the ligers, and started driving in the other direction as fast as he could. Maybe he was trying to protect me and our unborn (and, according to most of my other anxiety dreams, probably unnamed) baby?

So the ligers started chasing us and they were really fast. We had no protection because we were in an open-air jeep. I was so upset I was hitting APL and trying to reach around his feet to step on the brakes, thinking that we could still get the ligers to leave us alone by following the directions now. But clearly that wasn’t the case. The ligers were chasing us like prey and they were gaining on us. And we were really scared.

APL finally managed to loose the ligers by driving through a village, where the ligers lost interest in us in favor of the less protected villagers. So while APL, me, and our unborn unnamed baby got away from the ligers, we were only able to do it by leading them to eat someone else’s baby.

We led the ligers to the village. And I woke up feeling like I hadn’t slept at all.

Life Is Demanding Without Understanding

My feet HURT. A lot. Cramping, curling, stabbing, throbbing pain. And not just when I am standing or walking. All the time. When I'm sitting at my desk trying to get schoolwork done. While I'm watching TV trying to relax. While I’m laying in bed at night trying to fall asleep. The pain in my feet is exhausting in and of itself, not to mention the pain in my hands, the stiffness in my neck and shoulders, the general overall fatigue…Blargh!!

But this afternoon I had a massage with a new therapist (the one I had been seeing wasn’t working today.) And he told me that my skin was "angelic," without any blemishes. I have to admit that it was really nice to hear something good thing about my body, for a change. Also, as it turns out, he was a really good massage therapist, so I am actually feeling a bit better this evening.

And for those of you who are basking in the glory the profound title of this post, here’s another gem for you: No one’s gonna drag you up to get into the light where you belong.

Cryierd

On RK's recommendation, I've created a new word to describe how I feel:

cryierd
Pronunciation: \krah\yuhrd
Function: adjective
Definition: drained of strength and energy to the point where you just want to cry

But instead of crying, you’re in the law library trying to complete hundreds of pages of reading for a makeup class tonight that lasts through dinnertime that you have no idea how you will find the energy to even sit through, let alone pay attention…

I Think I Need a Bigger Thesaurus

Today I am so tired that I can’t even begin to put it into words.

Possible explanations for this extreme fatigue:
(a) I got a flu shot yesterday.
(b) I’m in law school and finals are approaching.
(c) I’ve been dealing with non-stop joint pain for about seven months now.
(d) All of the above.

Remember that post where I looked up all the synonyms for exhausted? Do you think it’s possible to feel all those words at the same time? If not, I think I might need a bigger thesaurus to find the right word to explain how tired I am today…

Student Health Wants To Help You* Feel Better and Stay Healthy!

*Only applies to students who happen to fit in our schedule or can wait two weeks for an appointment. We reserve the right to refuse to make accommodations for students with special health needs. Those students are totally out of luck.

On Monday I finally confirmed with my rheumatologist that I ought to get a flu shot this year because (a) my immune system is already messed up from having two autoimmune diseases and (b) my immune system is being purposefully extra messed up by my infusions of Remicade. This makes me way more susceptible to infection than most other people, and hence I should get a flu shot to decrease my chances of getting sick this winter. Because sick = bad.

To my mom’s credit, she said I should ask about a flu shot when I got my very first Remicade treatment at the beginning of October. So, yeah, I probably should have figured this whole thing out a bit sooner. But, to my credit, it turns out I wouldn’t have been able to get the flu shot before now anyhow. Because, to avoid bad interactions with the Remicade, the catch is that I can only get the flu shot two weeks on either side of any Remicade infusion. Which means that the soonest possible time to get the flu shot is in the middle of the four weeks between Remicade doses 2 and 3. Which is, um, rightnow.

So I called Student Health, which is blatantly proclaiming on its web page: “You can still get a flu shot!” Here is approximately the conversation that followed:

Z: Hi. I need a flu shot, please.

Student Health: Ok. Our first available appointment is November 19th.

Z: Really? That’s almost two weeks away…
(It’s also literally the day before my third Remicade infusion, which clearly isn’t going to work since I need the flu shot to be about two weeks before the infusion.)

Student Health: That’s the first available appointment.

Z: Well, I also have to get this infusion and my doctor said that I need to get the flu shot about two weeks before the infusion. Isn’t there any way that I could get an appointment for a flu shot sooner? Like today or tomorrow?

Student Health: The first available appointment is on the 19th.

Z: And there’s no way to make an exception for my special circumstances?

Student Health: You could call back tomorrow morning at 8am and we can see if there is a cancellation, but there’s no guarantee. We don’t have that many flu shot appointments.

Z: And that’s it? There’s nothing else I can do? I can’t book another kind of appointment and get a flu shot then?

Student Health: You could try calling on Wednesday morning at 8am for a cancellation if you can’t get one tomorrow morning.

Z: Fine. In the meantime can I book an appointment for two weeks after my infusion in case I can’t get one in the next day or two?

Student Health: No. We don’t have our calendars out that far.

Z: Thanks for your help.
(Or, in reality, thanks for nothing.)

All this trouble for yet another appointment for someone to take 30 seconds to stick a needle in my arm! So frustrating!!

(a) Why do I even need an appointment for someone to take 30 seconds to stick a needle in my arm?
(b) How is it that I have to wait almost two weeks for an appointment for someone to take 30 seconds to stick a needle in my arm?
(c) Why can’t Student Health do anything to help a student with special health circumstances?

So, even though my flu shot is only covered by my insurance if I get it at Student Health, I completely gave up on them. And yesterday I went and got my flu shot someplace else. (Thanks to RK for helping me out with that!)

And the flu shot? It took 30 seconds.

Massage Therapist Envy

Before I was ever diagnosed with RA, I started using massage therapy to help deal with my migraine condition. (Newsflash: In case you didn’t know, in addition to my two autoimmune diseases, I also have had a migraine condition since I was 17). Massage therapy isn’t always relaxing, sometimes they beat you up pretty badly, but I’ve found it to be really useful for dealing with the tension and stress related to my migraines.

Recently, I’ve been using some massage therapy to help me deal with the RA. It isn’t good for my joints directly – most of the time I ask the therapists not to even touch my hands or feet – but it is really good at helping me deal with the tension and soreness that develops in the rest of my body because of the way I have been holding my body to deal with the pain in my joints.

I get my massages at a place called Massage Envy, which is a chain that offers low-cost massages to its members. I originally joined when we lived in California and was delighted to discover that there was also one in Boulder. So I get massages as often as I need them (actually, they would probably help more if I got them more often) but I get one at least once a month. Sometimes I request to see the same therapist. Sometimes I let the receptionist assign whoever is working at the time I want to go.

Today I had a massage therapist I had never met before. Before we got started, she asked me what she could help me with today. I told her that I was having some serious pain and soreness in my neck and shoulders and asked if she could primarily work on that. Then, because I needed to tell her to be gentle with my hands and feet, I told her that I had just been diagnosed with rheumatoid arthritis. I was fairly shocked when her response was to admit to me that she had rheumatoid arthritis too. She said she had been diagnosed about two years ago and that she controlled it primarily through her diet.

Her honesty invoked about 800 thoughts at once. I had an overwhelming feeling of gratitude for my career choice. I’ve been studying and training for years to have a career in environmental policy. Luckily for me, that’s a career that primarily involves thinking and researching. I will certainly have to spend some time in front of a computer, which will be difficult with pain in my hands. But even if the pain never ever goes away I can still find a way to be successful in my field. What if I had been training to be a massage therapist? Or a musician? Or a painter? Someone who depended on their hands for a living? Imagine how much more frustrating that would be!

But then I had the realization that she had RA and was a massage therapist. And she was good!! And that made me feel hopeful for the first time in a long while. It probably wasn’t easy for her when she first got diagnosed either, but two years later she was dependant on her hands to make a living! And she did things with her hands to my back that I couldn’t even remotely consider doing right now. So it gave me hope that it is possible to get your RA under control – really under control. She had hers under control enough to use her hands all day every day!

And then it occurred to me that she said she controlled her RA primarily by changes to her diet. Diet? Really? Must remember to look into that option.

After the massage I thanked her for helping with the tension in my shoulders and neck. And I thanked her for being so honest with me about the RA and giving me hope. She was super nice about it – told me that it can be really scary at the beginning but that it’s possible to get it under control. She also recommended a natural topical cream that she says she uses when her joints act up. She said it was like bengay or icyhot only it was made from natural products and smelled better. So I bought some of that to try too.

She also said that more consistent massage could be useful, especially during this difficult time while I’m trying to adjust. So I think I will try to do that and I think I will request her next time. Because it was really nice to get a massage with some hope on the side.

Number Four Is Missing

I had yet another anxiety dream last night. I was at this big gathering – like a reunion or something – and I was there with my two sets of twins. Yes, instead of one unnamed anxiety baby, this dream gave me four. I had four girls ages 4, 4, 2, and 2. For some reason, Austin was not part of the dream (Maybe I scared him off by getting unnecessarily upset about the laundry?)

So I was trying to keep track of my two sets of twins while also getting something to eat and visiting with people at the party when I realized that one of the girls was missing. One of the 2 year olds was nowhere to be seen. So then I was trying to keep track of the other three while I ran around the party looking for the missing twin. I finally found my friend RK, who offered to watch the other three so that I could find the missing baby. I ran around the party like a crazy person looking for the baby, but no matter where I looked I couldn’t find my little girl.

In real life, when I told RK about this dream, she logically responded: “I was watching three of your children? You should have known right then it was a dream! I would never watch three of your children.” And that gave me a good laugh. Note to self: try to be more logical during anxiety dreams.

But the whole thing really leaves me wondering how I’m supposed to stay calm and stop stressing in real life if I’m so anxious in my dreams. I realize that I am probably having anxiety dreams because I’m stressing in real life, but it seems sort of like a vicious cycle. Because I seriously doubt I would stop having anxiety dreams if I let myself do a little more panicking during the day. But how am I supposed to relax during the day if I don’t sleep well at night?

Love and Laundry

Five months after my diagnosis, I’m still not feeling that well physically. I’m also starting to get pretty overwhelmed at the thought of attempting to survive a law school exam period in my present condition. I’ve been growing more and more frustrated by the unchanging situation and that makes me quick and easy to annoy. Things that I used to be able to shake off now make me seriously grumpy. And, unfortunately, I’ve found myself directing most (if not all) of that uncontrollable grumpiness towards APL.

Now, it’s not that APL hasn’t done anything to invoke my annoyance. Trust me, he has. But because I’m so on edge about everything else, the problem is that I seem to get really grumpy really fast. And that only annoys me more because I can’t even seem to control my own feelings anymore.

Take the laundry example. APL and I used to argue a lot about the best way to get household chores done. He and I approach the concept of chores quite differently: me with the over-obsessive efficiency of a law student, and he in a totally lackadaisical fashion since he is the mellowest person you’ve ever met. We also have really different levels of tolerance for messes: for me the more stressed I am the messier everything looks, and, as the mellowest person you’ve ever met, you can imagine messes don’t really bother APL. This results in very different housework techniques: if I see a mess I clean it up right then, but if he sees a mess he thinks, oh, I’ll do it later. Or he might not even notice the mess in the first place. So by the time he might have possibly remembered to do something about the mess, I’ve usually already gotten annoyed and done it myself, which used to leave me with the feeling that I did all the chores with no help from APL.

So, this summer we sat down and talked about the best way to deal with both of our approaches towards housework. In the end we decided that the major problems were the kitchen and the laundry. To accommodate both our styles, we made a deal that I would keep the kitchen clean and he would take care of the laundry. So, when the laundry basket is full, that’s his cue that it’s time to do laundry. And since it isn’t his job anymore, I stopped getting annoyed when he neglected to load or unload the dishwasher. Worked pretty well for a while.

But then APL started slacking with the laundry. And the laundry basket was overflowing. And then there was a mountain of laundry on the floor next to the laundry basket. And he still wasn’t catching up with the laundry. So I helped him catch up. But then he slacked some more and there was a mountain of laundry again. I tried to stop myself from getting upset about it. Things have been really busy for both of us. We’ve both been dealing with a lot. It’s not that big of a deal. It’s only laundry.

Today, since I didn’t end up feeling well enough to concentrate on schoolwork, I decided to help APL catch up with the laundry. I mean, I was home all day anyways. It was no big deal for me to do a little laundry. I actually didn’t mind because it left me with a slightly more productive feeling, since I was frustrated I hadn’t been able to get any schoolwork done. But then APL came home this evening and said something that set me off. Honestly, I’m ashamed to admit that I don’t even remember exactly what he said. I just remember that he didn’t thank me for spending all day doing a chore he had neglected for weeks. And before I knew what was happening, I was furious with APL.

But simultaneously with wanting to smack APL for being so bad at doing his fair share of the housework, I was also really frustrated with myself that I couldn’t seem to control my emotions. After all, it had been my choice to help APL with the laundry. I could have left it there for him to do this weekend. But, even though I knew I was being unreasonable, I still couldn’t stop myself from getting mad at him. I had to shut myself in my study to keep my emotions from shouting at him.

I know I have every right to be annoyed that APL wasn’t doing a good job helping with the housework, but I should also be able to discuss that problem with him like an adult, not get upset like a little child. But my emotions are just flying off the handle because I’m so frustrated and confused about how to deal with everything that’s going on right now. But that shouldn’t give me any right to get overly upset with APL. APL is the one who is helping me most. I simply couldn’t get by at all without him.

In those instances where I can feel a little thing turning into a big uncontrollable thing, I have to try to remind myself how much I love APL. I have to remind myself that we have something bigger than who did or didn’t do the laundry this week. I have to try to remember what’s important. Tonight, while I was shut in my study trying to calm down, I came across this list that someone I know posted to facebook. Yes, I’m aware that the list is totally cheesy, but, somehow, it calmed me back down and made me direct my attention to all the reasons that I keep APL around. It made me go downstairs and give APL a hug. So, I thought I’d share it here:

Children’s Responses to the Question: What Does Love Mean?

• “Love is when you tell a guy you like his shirt, then he wears it everyday.” – age 7

• “When someone loves you, the way they say your name is different. You just know that your name is safe in their mouth.” – age 4

• “Love is when you go out to eat and give somebody most of your French fries without making them give you any of theirs.” – age 6

• “Love is what makes you smile when you’re tired.” – age 4

• “Love is when Mommy gives Daddy the best piece of chicken.” – age 5

• “Love is when Mommy sees Daddy smelly and sweaty and still says he is handsomer than Robert Redford.” – age 7

• “When my grandmother got arthritis, she couldn't bend over and paint her toenails anymore. So my grandfather does it for her all the time, even when his hands got arthritis too. That's love.” – age 8

I Shouldn’t Even Be Writing This Post

I’m pretty frustrated about the large amounts of pain currently in my body – particularly in my hands and my feet. I’m even more frustrated by the fact that I shouldn’t even be writing this post! My fingers hurt a lot right now, so I probably shouldn’t be wasting my limited typing ability on my feelings but should instead be taking notes for international law since I’m on call on Thursday, or writing my journal entry for mediation, or starting the research for my mediation paper, or finishing the newsletter for work, or a myriad of other things that also require the use of my fingers!! So, I guess I will get to trying to do those things, but first I wanted to register the complaint: it really sucks when your fingers hurt!!!

I’m At The Beach With My Friends And Everything’s Ok

For some reason I felt like fatigue really hit me with a hammer yesterday. (Or, I suppose, kicked me with several thousand horses, as it were). I had to get up pretty early to go to yet another doctor’s appointment. Then I felt like the weight of my backpack with several casebooks in it was literally crushing me while I walked between the bus stop and the law school. And Wednesday is my long day of classes, so I was pretty worried about being able to be alert through them all. However, I also discovered that large quantities of caffeine do nothing for fatigue – I just ended up feeling exhausted and jittery.

And when I wrote that sentence, I decided “exhausted” wasn’t a tired enough word. So I looked it up in the thesaurus, and I got a good laugh out of the options it suggested:

all in, beat, bleary, bone-weary, bushed, crippled, dead, dead tired, debilitated, disabled, dog-tired, done for, done in, drained, effete, enervated, frazzled, had it, kaput, limp, out on one’s feet, outta gas, prostrated, ready to drop, run-down, sapped, shot, spent, tired out, wasted, weak, weakened, wearied, worn, worn out

Drained is pretty good. Sapped, spent, beat. Run-down, I’ll take. Bone-weary is fairly accurate, especially considering the pain in my joints. But crippled?? Disabled??? Hey – that isn’t very nice, thesaurus! DEAD?!? Oh. Ok. Moving on.

Anyhow, after I finally got out of class yesterday I had a fairly overwhelming desire to crawl straight into bed and not get out for several days. But I’m really glad I didn’t. Instead, I headed downtown to see an old friend who was in town for a couple of hours. We were really good friends in junior high. I was there when she started to teach herself to play the guitar and made her first attempts at songwriting. (The title of this post is one of her 8th grade song lyrics!) We sort of drifted our own separate ways during high school. And it had been a good eight years since we had seen each other, or even really talked.

It was really good to see her. In some ways, she was the same friend I remembered from when we were thirteen. (And she confirmed to me that, even as a seventh grader, I was a ridiculous over-achiever.) But she was also different in a lot of ways. While she was a serious pre-med in college, her life took a different turn after a serious injury. Instead of med school, she is now a very successful professional DJ! DJ Lady Sha was recently the first female DJ to win the Winter Music Conference DJ Spin-off in Miami! She’s pretty amazing.

The thing that really struck me was that she had a trajectory for her life – a really specific plan for what she thought she was going to do – and then her life forced her to change direction. And while she ended up taking a completely different path, she is really good at what she does and she seems really happy. I think it probably isn’t easy for anyone to completely change the direction of their life and still be happy and successful. But now I’ve seen proof that it’s possible. And that’s worth getting out of bed for no matter how bone-weary I feel.

Except for the Part Where the Horses are Kicking Your Wife

I got a free subscription to a magazine called “Arthritis Today” that is supposed to have modern techniques for living with arthritis. I was flipping through it tonight while we were getting ready for bed when I came across an article entitled “Relationship Realities.” The tagline read: “Although maybe not as visible as the physical symptoms, the interpersonal side effects of arthritis can be just as painful.” Sounded interesting and potentially useful to me and APL, so we decided to read it together.

A few paragraphs in, we realized that the tone of the article lacked a bit of the "positive thinking" concept supported in other parts of the magazine:

Arthritis does not impact just the person with the diagnosis. It also affects spouses, children, parents, friends, and even co-workers. The truth is, chronic illness often curtails social activities, impacts intimacy and requires extra patience and understanding. In fact research has found that people with rheumatoid arthritis (RA) have less emotional support and social companionship than their peers without RA do.

APL’s righteous outrage response: RA sounds like a fate I wouldn’t want to wish upon my enemies – who wants to die alone in a cave? With no sex? And P.S. and your joints are creaky and you have no friends. Isn't this magazine supposed to help you live with this disease ? Instead they are saying, “well…you’re boned!” I mean, who studies this shit: “Do your knuckles hurt? Hmmm…do you have any friends? Oh, I see….”

By this point, we were laughing quite heartily about how bad this “good” advice was. Then we got to the part of the article that explained that good communication was key to saving your relationships:

To cope, Lynne Matallana, 53, of Anaheim, Calfi., and her husband have created a game to better communicate. “He asks, ‘How many horses?’ and I tell him, ‘Today it feels like I’ve been kicked by 50 horses,’ or ‘It feels like I’ve been kicked by only five horses today’” she explains. Developing a “code” such as this serves two purposes: It enables Lynne to be honest about the amount of pain she’s experiencing, and it strengthens the bond she feels with her husband. Likening pain to a heard of wild horses certainly won’t make it disappear, but the thought of dozens of mares kicking in unison, like a line of cancan dancers, is an image that has the power to elicit a smile

APL’s righteous outrage response: Hahaha! Horsies kicking! How fun! Except for the part where the horses doing the cancan are all KICKING YOUR WIFE, YOU DOUCHEBAG!

APL makes me laugh and he’s going to save me from the line of cancan kicking horses! Also, he was willing to read through an article with me that might have had good advice for dealing with the third wheel that has suddenly appeared in our relationship: my chronic illness. And even when the article sort of turned out to be a great big cancan of scientifically studied depression, APL helped me laugh all the way through it. I can honestly say I enjoyed reading the article – because I did it with him.

I love love love APL.

Unsweet Dreams

I haven’t been sleeping well. I know I’ve already explained how sometimes I have trouble falling asleep or staying asleep, but that’s not all. For a while now I have also been having a seemingly unending stream of anxiety dreams. Here’s a nerve-wracking sample:

~I dreamt that I had to drive from the house I grew up in to my high school, a drive I have done at least a million times. But in the dream there was something wrong with my eyes and I couldn’t see properly. So I had to do the drive by memory and sound, just hoping I didn’t run into anyone or hurt my sister, who was also in the car.

~I dreamt that my mom had done a huge and expensive remodel of her house, but it looked absolutely horrible. She asked me what I thought about it and I found my tongue totally tied – it was so horrible that I couldn’t lie to her about it, but I was too worried about hurting her feelings to tell her the truth.

~I dreamt that I had a baby but it was sickly and I didn’t know how to take care of it. Then I found out that APL’s parents were coming over and I was panicking because we hadn’t told them about the baby and the baby didn’t even have a name yet.

~I dreamt that I needed to be somewhere – somewhere important – and I knew that whatever it was it was starting without me. But no matter how hard I tried in the dream, I just couldn’t wake up and I couldn’t remember where I was supposed to be.

~I dreamt that I was a teacher, in charge of a class of fifteen five-year-olds who were all totally out of control. But I couldn’t get them under control or do a real lesson because their parents kept coming into the classroom to yell at me about what a bad teacher I was.

~I dreamt that the windshield in our brand new car had been completely shattered. There was glass all over the street and it was snowing and the car wouldn’t start.

Sometimes, I can’t even remember the story from the dream, I just wake up feeling anxious. Maybe one of the drugs I am taking is causing the dreams? I guess I should probably ask the rheumatologist about that.

But maybe it’s just that I’m not doing as good of a job staying calm and finding outlets for my stress as I thought I was. I also find it interesting that these dreams are basically fantasy anxiety dreams – they are all sort of off-the-wall and pretty unrelated to what is actually going on in my life. The things I am really worried about – falling behind in school, impending exams, being able to do the things I want to do in my life, getting depressed about feeling so physically icky all the time – don’t seem to show up directly in my dreams. Maybe I am too anxious about the things I am anxious about to even have anxiety dreams about them?

In any event, I’m not really sure what to do about the anxiety dreams. All I know is that I’m exhausted.

Sew What?

I used to sew. A lot. By hand. My best friend since kindergarten, LK, and I used to buy clothes at thrift stores and sew them into new designs that we called “recycled fashions.” We even sold some of our clothes online. In college, when people needed a costume for a costume party, they usually came to me and I would help them make something. I used to do a lot of sewing by hand. It was relaxing and enjoyable.

Today my hands are so demented it just took me half an hour to replace a button on the shirt I was wearing yesterday. Granted, it was a weirdo fabric-covered button (i.e. not your ordinary button with a couple of holes in it), but still. It was one button. It should have taken approximately three minutes, tops.

::sigh:: At least I did it in the end, I guess.

If You Stay Out Too Late, You Turn Into a Pumpkin

It’s 11:08a.m. on Sunday, October 26. Barack Obama has just started his speech at the rally in Denver and APL is there watching him. Unfortunately, I’m at home in bed even though I would have really liked to go. But just like the weekend we went to see the aspens changing, I was forced to recognize this morning that I had passed my tolerance point.

Despite not being able to go to the rally, I have had a wonderful weekend. On Friday afternoon, my friend RK (a.k.a. Judice) and I made caramel apples at RK’s house while our puppies played in the pasture. The caramel apples turned out to be a lot easier than we expected, and we really enjoyed making them. Then both our boyfriends came over and we made some pasta and garlic bread for dinner and we all watched a movie. It was a really relaxing and fun way to spend a Friday.

On Saturday afternoon, APL and I went with a bunch of friends to a local farm that had over 100 acres of pumpkin fields. Pumpkins as far as the eye could see! It was amazing! And it was a gorgeous, sunny, fall afternoon. We wandered through the fields until we all found the perfect pumpkins – some of our friends even found several! Then we bought some pumpkin bread and orange soda and lost ourselves in one of the farm’s corn mazes for a while. We also picked up some of the most alien looking gourds I have ever seen.

We bought the pumpkins in preparation for our third annual pumpkin carving party, a tradition APL and I started when we moved to Boulder. Unfortunately, by the time it was time for the party that evening, I was already exhausted from spending the afternoon at the farm. I decided that achy hands + slippery pumpkin guts + knives = not such a good idea. So I didn’t end up carving a pumpkin this year. But I did enjoy hanging out with my friends while they carved their pumpkins. I watched a little bit of Army of Darkness, which we had playing on a loop in our living room, and ate a caramel apple. And the end result this year was awesome! We had sixteen pumpkins and they looked incredible all together. We spent some time just sitting in the glow of the pumpkins in the living room. I really enjoyed it.

Of course, by the time most of the party left and my closest friends helped us clean up a little bit, APL & I went to bed well after midnight. We were planning to get up early to catch a bus to Denver to see the Obama rally, so I was already nervous that I wasn’t going to get enough sleep. I don’t know if my nervousness kept me awake or what, but I hardly slept at all. It took me an hour or more to fall asleep in the first place, and then I kept waking up. I tried everything I could think of to make myself more comfortable so I could sleep. I put socks on. 1:54 a.m. I got up to go to the bathroom. 2:15 a.m. I got a drink of water. 3:04 a.m. I turned the fan off. 4:39 a.m. I tried a new pillow. 5:55 a.m. No luck.

Needless to say I was less than thrilled when the alarm went off at 7:00 a.m. Also, all the wandering around at the farm yesterday had left my feet feeling like someone had run over them with a steam roller, which didn’t bode well for walking the twenty or so blocks from the bus station in Denver to the park where the rally was taking place. When I told APL how I was feeling, his immediate response was not “we don’t have to go” but “you don’t have to go.” It made me feel sad that my body was so uncooperative and also that I can be such a burden on APL. Even though I really wanted to go to the rally, when I really thought about how I was feeling I realized that I would only be a drag on APL and his friends if I tried to push myself to join them. I’m exhausted, I would have trouble walking, I wouldn’t be able to stand around for very long, and APL would have to take care of me instead of enjoying himself. So APL met his friends and caught the bus to Denver without me, and I, mercifully, actually got a little bit of sleep after he left.

When I woke up again I felt, if not better physically, at least a little less sad. I did have a really wonderful weekend otherwise. And I really am supposed to be resting, not running around like I have all the stamina in the world. I have to pick my battles, I guess, and this weekend I picked friends and pumpkins. Sorry about that, Obama. Guess you’ll have to make do with 99,999 supporters today.

Lovingkindness

Yesterday in my Mindfulness Class we learned about lovingkindness meditation, which focuses on bringing kindness into our meditation practice and into our daily lives. Our teacher told us that an attitude of lovingkindness can help support us in remaining composed while dealing with the difficult parts of our lives. This concept may sound seriously hippie woo-woo, but considering how frustrated I’ve been with my condition lately, and how this frustration has been spilling all over the people I love, I think lovingkindness meditation will probably be a really useful skill for me to work on.

Our teacher gave us an article that perhaps describes the practice of lovingkindness a bit better than I can: “The practice of lovingkindness meditation brings to life our innate capacity for connecting to ourselves and others. The lovingkindess we cultivate breaks through the habit of indifference of judgment that keeps us feeling separate from others. A capacity for friendship and kindness exists within each of us, without exception. No matter what pain we might have gone through in our lives, that capacity is never destroyed. It may be – and often is – obscured, but it’s there.”

So, in class, we started with a gratefulness circle, which is exactly as hippie woo-woo as it sounds! Basically, we went around in a circle and said, out loud, things we were grateful for in that moment.

I was grateful for my boyfriend, APL.

I was grateful that my second Remicade treatment was over and seemed to go well.

I was grateful for my friend, we’ll call her Judice (ha!), who went out of her way to drive me to my Mindfulness Class that afternoon, because otherwise I probably would have stayed home.

I was grateful for my puppy, River, who always brings a smile to my face.

I was grateful for ANTM and the mindless enjoyment I get from watching it with my friends.

I was grateful that internet that allows me to stay connected to my friends and family who are spread all over the world.

After the gratefulness circle, we took some time to think about the experience. And I realized two things. First, we went around that circle six times and I picked a different topic each time, but I could have easily offered six different reasons that I was grateful for APL or six different reasons that I was grateful for Judice. Despite how icky I may feel, I still really ought to try to show my gratefulness to the people I care about more often, because I honestly wouldn’t be able to get by without them. Second, I realized it actually made a difference in my mood to think about things I am grateful for. Despite the fact that I am honestly pretty unhappy with the shape of my life right now, there are still good things. If I focus more on those good things, maybe things will get at least a little easier. Probably another one of those goals that is easier said than done, but at least I can try.

Then we moved into the formal practice of lovingkindness meditation, and I thought that was really interesting too. Like the article describes, “We begin with ourselves because truly caring for ourselves is the foundation for being able to care for others.” Our teacher directed us to repeat silently, over and over, the following phrases:

May I be happy. May I be healthy. May I be peaceful. May I be safe. May I stay calm and patient while I try to work on these things!!

From there, our mindfulness teacher directed us to offer the same phrases to a person who has been a teacher or a mentor in our lives, someone who has shown us the best in ourselves. I immediately thought of a professor we call “the Guru.” He has been my professor, my boss, my mentor, and my friend. He has taught me, guided me, appreciated all the hard work I have done, and been there for me during difficult times. This semester I’ve realized exactly how much I appreciate him because he is on sabbatical in California and I miss him!

Guru, may you be happy. Guru, may you be healthy. Guru, may you be peaceful. Guru, may you be safe. Guru, may you come back to Colorado soon!

Next, we offered the phrases to a friend. I immediately thought of Judice, who was pretty much responsible for me being there to do this meditation in the first place. She knew I was feeling exhausted from my treatment but that the mindfulness class was good for me, so she picked me up at my house and drove me to it. She also gets the majority of the credit for helping me survive through 1L year of law school. Actually, for helping me survive law school in general. And since my diagnosis she has been an especially great friend. She takes River hiking when I can’t. She helps me talk through my frustrations over delicious hot chocolate (for which APL should also be grateful!) Also, sometimes she brings pie! I honestly don’t know what I would do without her.

Judice, may you be happy. Judice, may you be healthy. Judice, may you be peaceful. Judice, may you be safe. Judice, may you laugh at me calling you Judice. Also, may you have facebook in the Pennsylvania courthouse because otherwise I have no idea how I will survive without you next year!

We then had to try to offer the phrases to a difficult person in our lives. Someone who has annoyed or frustrated or hurt us, or all of the above. For obvious reasons, I’m not going to go into the details of this person here. But I tried to offer the phrases as a gift, expecting nothing in return. And I tried to offer the phrases as true – not only to help that person but also to help myself in dealing with that person.

May you be happy. May you be healthy. May you be peaceful. May you be safe.

In the end, we offered the phrases to everyone.

May all beings be happy. May all beings be healthy. May all beings be peaceful. May all beings be safe.

And may I try to keep this attitude of lovingkindness. At least some of the time!

Nemo & Me (and the IV)

I went for my second Remicade treatment today. I sat, all by myself, hooked to the IV and the blood pressure monitor and the pulse monitor for about three hours. It wasn’t so bad. I considered trying to get some schoolwork done while I was there, but then I re-considered and watched Finding Nemo on my laptop instead.

At the beginning of the treatment my rheumatologist came by to check on me. He examined each of my joints for swelling and pain and said he thought he could feel improvement in them. Honestly I’ve been feeling so upset and frustrated lately that I’m not sure I can say I’ve witnessed any improvement, but I guess it’s a good sign that the doctor thinks I’m improving.

I feel pretty ok right now except that I am really tired. But I can’t tell if it is the medicine making me tired or the fact that, for some reason, I hardly slept at all last night. Needless to say I’m grateful this week is coming to an end. Getting through classes and attempting schoolwork this week has been particularly hard. While I’m freaked out about the weeks disappearing without me getting enough schoolwork done, I’m also really grateful for the weekends when I feel like I can take things a little slower.

Mild Civil Disobedience

I’m really exhausted today – headachy and tired and just generally feeling pretty icky. But, I have to admit that I am slightly cheered by the act of mild civil disobedience that APL and I have masterminded.

Our HOA (with whom we have had several previous “beefs”) has decreed that a maximum of ONE political sign intended to impact the outcome of the election may be displayed within the confines of our lot, so long as it is smaller than 36” X 48” and gets taken down immediately after the election.

Way to let us express our political feelings there, HOA!! How awesome that we are able to use our homes as we may please to influence the election!!! Apparently, even though we own the house we have contracted away our Constitutional freedom of speech so that the HOA will cut the lawn.

This rule really bugged us – not only because it meant we were forbidden from hanging two (gasp!) Obama signs in our bedroom windows if we wanted to, but because it was completely unnecessary rulemaking! It’s not like the complex was out of control with political signage! Of the 150 units in our complex, I think there were maybe three political signs. Oh, how horrible the complex looked with those three signs!!! It seemed to us that the HOA was unnecessarily legislating on the subject because they wanted to flex their power muscles.

So, of course, I immediately set my law school skills to work reading the fine print of the rule they had written to see if there was any way for us to get around it. Unfortunately there wasn’t – not at least within the lot that our house is on. But the street that runs through our complex is a public street (which the HOA themselves informed us when they were once yelling at APL for parking a truck that turned out not even to be his truck). We never agreed to let the HOA regulate our cars. I mean, I have every right to plaster my car in bumper stickers and park it on a public street. Thus I have every right to fill my car windows with Obama signs and park it on a public street. So we did. With two cars.

This is a double win because (1) we get to show our support for Obama who should clearly win the election (don’t even get me started on how terrifying Sarah Palin is!!) and (2) hopefully it will annoy some of the power hungry HOA board members. And that makes me smile at least a little. Guess it’s the little things that keep you going…

P.S. Just in case you’ve been living under a rock, you should really check out the SNL sketches featuring my favorite Alaskan governor. They are hilarious yet terrifying, because half the time they are literally quoting words that have come out of Sarah Palin’s mouth.

Just Keep Swimming

I just got some pretty excellent advice from AJ: just keep swimming, just keep swimming.

Dory: Hey there, Mr. Grumpy Gills. When life gets you down do you wanna know what you've gotta do?
Marlin: No, I don't wanna know.
Dory: [singing] Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.
Marlin: Dory, no singing.
Dory: [continuing] Ha, ha, ha, ha, ho. I love to swim. When you want to swim you want to swim.
Marlin: Now I'm stuck with that song... Now it's in my head.
Dory: Sorry.

Makes me feel a bit better. Only now I want to leave the library and go home and watch Finding Nemo. Which isn't exactly productive, AJ!

Have You Seen Me Lately?

I’ve just had an experience that I can only describe as the verge of total panic. I’ve been trying so hard to keep myself calm about everything lately that I think I just reached a point where I sort of lost the ability to stay calm.

I guess it started last night. We were watching a movie at a friend’s house when APL got a headache. Despite the fact that I keep a drug store’s worth of different kinds of painkillers in my purse, his headache got worse. Now, on the one hand, APL can be a little bit of a baby when he doesn’t feel well. I think it has to do with the fact that he so rarely feels sick. But on the other hand, when a person doesn’t feel well it is totally reasonable that they might mope a little or feel a little grouchy. No one is really expected to function normally when they don’t feel well, at least in theory. The sane part of me wanted to take care of him and do whatever I could to make him feel better. He takes such good care of me that he deserves to be babied every once and a while when he isn’t feeling 100%.

But then there was this unbalanced part of me that wanted to shout at him. Actually shout at him while he wasn’t feeling well. Because he wasn’t feeling well! It’s only a little headache! Why are you being such a baby? I have a headache most of the time and my feet hurt so bad that I feel like I want to cut them off and I feel like I haven’t slept well in three weeks! What are you even complaining about? How is it fair that it’s ok for you to mope about a little headache when I have to try to function like a normal human being while I feel horrible all the time?!?

And the sane part of me said: what’s wrong with you? APL takes care of you all the time when you don’t feel well. You couldn’t even begin to get by without him. Why on earth would you want to make him feel worse when he already feels bad? But, unfortunately, the sane part of me couldn’t shut up the unbalanced part of me. I was so frustrated about how unfair it is that I feel so awful all the time and yet I still have to keep going. When we got home, I had to shut myself alone in the bathtub to keep myself from being unnecessarily mean to the one person who is always there for me. It wasn’t good.

I felt a little better this morning. But then I started trying to catch up on homework. And I worked for a couple of hours but I only made the smallest amount of progress. And I realized that the list of things I have to catch up on keeps growing and growing. Every week I add readings and assignments that didn’t get done to that list. But when on earth am I going to find time to go back and do it all? If I can’t even find the time and concentration to do the reading I am supposed to do for this week, when on earth am I going to find time and concentration to do all the reading for last month? It just doesn’t seem possible. So then what am I going to do? How on earth will I get through finals?

Calm down, I told myself. Just keep working. Just try to make a little dent in it. Do as much as you can and we’ll figure out what to do with the rest of it later. But then it was hot in my study but I couldn’t open the window because I was afraid the noise outside would distract me. And there’s no screen on the window and there have been a lot of flies getting in our house lately. But then APL was cleaning out his study, so the living room was covered with his organizing – a.k.a. currently a total mess. The kitchen table was for some reason also buried under stuff, so there wasn’t anywhere else in the house to work. Plus, all the mess and clutter was starting to make me feel a little panicky. Which also made me want to shout at APL for the house being such a mess, which clearly wasn’t his fault as he was trying to clean it!

I know that I can’t be taking my frustrations out on the person who supports me most, so I decided I had to leave the house. I threw my heavy casebooks and laptop into my backpack. I told APL I was going to Panera to work for a while. I got in the car and started driving. It was beautiful outside. The leaves were changing colors and the late afternoon light was making everything glow. I rolled down the windows and blasted some Counting Crows, which has been my favorite band since I was twelve and always seems to make me feel better. And I started feeling a little bit better.

But not better enough. I drove the five minutes to Panera and I still felt like I was about to fly off the handle and/or go totally insane and/or give up on trying all together. So I kept driving. And driving. And driving. I finally forced myself to stop at another Panera about twenty miles from my house. I’m not really sure how I made myself stop, but I think if I hadn’t it is pretty likely I would have driven all the way to Kansas. I ordered a bowl of soup and I made myself write this blog post to see if I could figure out how to calm myself down. And while I feel a bit calmer I still have no idea how I’m going to get through all my schoolwork. Or keep myself from taking out my frustrations on APL.

::Sigh:: I guess I'll go to the law school library and see if I can make a dent in my to-do list. I have to start somewhere.

Get away from me
Get away from me
This isn’t gonna be easy
But I don’t need you
Believe me

Yeah you got a piece of me
But it’s just a little piece of me
And I don’t need anyone
And these days I feel like I’m fading away
Like sometimes when I hear myself on the radio

Have you seen me lately?
Have you seen me lately?
Have you seen me lately?

My Feet Get An “F”

My feet hurt today. A lot. It feels like all of my toes have been smashed with a hammer and then tied in knots. My arches are cramping and the cramps are starting to move into my calves. It’s really no fun to walk. In fact, I don’t even want to stand. But, then again, sitting is not a whole lot better because it still doesn’t make the pain stop. Nothing seems to help. I don’t have anything profound or insightful to say about it. It just sucks.

Maybe Next Week?

Today I had a small victory: I did all the reading for my Toxics and Hazardous Waste Regulation class this afternoon. The class only meets once a week, so the reading list can feel sort of hefty. I think today may be the first time all semester I actually got through all of the assigned reading. I read the text. I read the cases. I even read the statutes.

However, as it turns out, I actually sort of have permission to be unprepared for this class. The professor, who knows about my situation, has been super understanding. He told me flat out that he was never going to “cold call” me in this class. That basically means that he’s not going to turn to me in front of the whole class and say “Mariah, what is the holding of American Mining Congress v. EPA?” (Although I am delighted to say that today I would actually be able to answer that question!)

The thing is, while I am really grateful to have the pressure taken off me in that class, it feels really obvious, at least to me, that the professor avoids calling on me. There are a couple of other quiet students that don’t volunteer in class, but he still calls on them fairly often. In fact, since there are only eleven students in the class, he calls on everyone fairly often. Everyone but me. I do worry that my classmates will think I am getting special treatment without a reason. So maybe today I will be able to volunteer a bit in class since I am actually prepared. I think if my voice is heard in the discussion occasionally, no one will notice that he didn’t actually call on me.

But today wasn’t a total victory. I didn’t do any of the reading for my Foundations of Natural Resources Law class. In fact, I’m about four weeks behind in the reading for that class. I’m also quite behind in the reading for International Law. Not to mention that even though I did all the reading for Toxics today, I have quite a bit of catch-up reading to do from previous weeks. And I need to take notes on all this reading so that I will have good outlines to get through exams. I used to be really diligent about taking notes at the same time as I was doing the reading, but this semester I’m just trying to get through the reading so I’ll have some idea of what’s going on in class. I’m using a highlighter and putting off the actual note taking until later.

It has been extremely difficult to do even the small amount of work I have managed this semester. The pain in my body distracts me. The fatigue makes it hard to concentrate. I’ve been having really bad headaches. I’ve feel so downright icky that it has been really difficult to force myself to sift through complicated readings that are not always the most stimulating. Half the time I am so out of it that even if I did “do the reading” I wouldn’t have absorbed anything anyways. So, even though I am doing as much of the work as I can make myself do, the mountain of work keeps growing and I feel like I’m falling further and further behind. Actually, I am falling further and further behind.

I am trying to keep the “non-judging” attitude working as is pertains to my schoolwork. I’m trying not to judge myself. My inability to concentrate and be completely diligent on schoolwork right now is a physical limitation of my body that I have no control over. I’m trying to step back and congratulate myself for the work I do get done and also not be too hard on myself for the work I am unable to get to right now. I just try to do what I can, one day at a time.

However, this calm acceptance of what is essentially horrible procrastination is based on the theory that, maybe next week, I will be feeling better so I will be able to go back and catch up on my work. I keep telling myself that, in a week or two, the treatments will kick in and I will find it easier to concentrate. Then I can go back and do a good job on my notes and make sure I really understand the reading. Then I can get back to being a good student.

But the weeks of the semester are ticking by. While I am confident that we will eventually find a treatment that works for me, what if that eventually takes until spring? What am I supposed to do about this semester? What if all the weeks disappear and I never get to the point where I feel well enough to be a good student again? How will I ever catch up? How will I get through finals? How will I salvage my GPA?

I guess I just have to keep up hope that I will be feeling better next week. Maybe next week.

Halloween Candy

I realized this evening that I take a lot of pills every day. In addition to the Remicade treatments I am now receiving by IV, these days I take at least seven pills every night. Three are vitamins. One is an iron supplement because my body is still rebuilding its iron stores from this summer, when I was seriously anemic from the undiagnosed autoimmune disease. The second is a combination fish oil/flax seed supplement, because supposedly both of those things are good for people with RA. The last is a general women’s multivitamin, because I figured my body is pretty messed up so I am probably missing out on something I need!

The other four are drugs. The first is a thyroid pill that I have been taking every day of my life since I was diagnosed with my other autoimmune disease in kindergarten. That’s right, I already had autoimmune disease number one – RA is actually number two. The first one is called Hashimoto’s Thyroiditis, where my immune system attacks and destroys my thyroid gland. So I’ve been taking supplemental thyroid hormones since I was five.

The second pill is birth control, which is pretty much mandatory when you are on RA drugs that result in pretzel babies, should a baby happen to occur. Though I must say (perhaps mom and other family members might want to skip the rest of this sentence) untreated RA pretty much serves as birth control all on its own. The third pill is an antibiotic that the doctor gave me for a rash under my arms that may or may not be a side effect from one of the other drugs I am on. It seems to be making the rash go away. The last evening pill is ambien, a sleeping medication, which is supposed to help me sleep better. But I still haven’t been sleeping that well or feeling rested when I wake up in the morning.

So that covers the pills I take in the evening. In the morning I take another dose of the antibiotic, and I also take my daily dose of prednisone. Prednisone is a steroid that is supposed to be helping with the RA pain, but I honestly don’t feel like it is doing that much. But I am on a pretty low dose of it, due to yucky side effects, like weight gain. Honestly, I would probably be worse off without it. However, even with the prednisone, I usually also take several pain killers throughout the course of the day, just to get me through my classes and errands and whatever else needs doing.

On Sunday mornings, I take six methotrexate pills. It’s a weird prescription that requires you to take six pills, once a week.

It’s a lot of pills to swallow. Especially after a long day where I still feel like I am far more exhausted than the few things I managed to accomplish today merit.

But a good friend of mine, who has some experience with health issues of her own, told me that I should think of my medicine not as a burden but as a blessing. She said that I should view the medicine like candy – something to look forward to because it will help me. And I think she might be right. Trying to stay positive about my situation has really helped me get through this so far, so I guess it could also work with my medicine. Maybe the power of positive thinking can actually help my medicine help me feel better.

So, I’m really going to try to think of my medicine like candy. And it must be Halloween!

Mommy & Me (and the IV)

I finally had my first Remicade treatment on Thursday. After all the hoops I jumped through to get myself to that appointment in the first place, the treatment itself was surprisingly simple. The nurse did somehow manage to spatter my blood all over the floor when she placed the IV, which was lovely, but after that nothing really happened. I had the IV in my left hand, and it was connected to two bags of liquid hanging from a tall rack next to me – one of saline and one of Remicade. These were both slowly dripped into my system. I had a pulse monitor on my left index finger, which started beeping if I moved around too much, so I had to sit relatively still. I also had a blood pressure monitor wrapped around my right arm that took my blood pressure every half hour or so. And that was it. I just sat there like that for about three hours. It was actually pretty easy.

Still, I was pretty nervous about what the treatment would be like. The only other time I ever had an IV was when APL took me to the emergency room for a really terrible migraine about two years ago. I was so out of it that time that I barely remember it, plus they basically just gave me fluids and a little bit of pain killer. Remicade, on the other hand, is a pretty serious medication with a lot of nasty side effects. I was concerned about how I would feel during the treatment and afterward.

I also really don’t like hospitals or doctors. They make me really nervous. I actually have a condition doctors call “white coat hypertension,” where I get a temporarily inflated blood pressure just from being at a doctor’s office. And there was something pretty creepy about this room full of sick people hooked to IVs, especially since most of them looked a lot sicker than I did. The nurses kept asking me if I knew about the side effects of Remicade and had agreed to accept them, which made me feel like I was doing something dangerous. And it really made me feel like an invalid when I had to get up and go to the bathroom – a nurse had to unhook me from a bunch of different machines and I had to roll the IV into the bathroom with me.

So I am extremely grateful that I didn’t have to go through that first treatment all by myself. APL had to work, so he couldn’t be there, but my mom had the day off from work. So she decided to fly all the way from California to Colorado to take me to the treatment and spend the weekend with me. She came a long way for a treatment that turned out not to be a big deal, but I am so happy she did. We spent the three hours that I was hooked to the IV talking and flipping through stupid girly magazines. And while I registered that the situation was a bit creepy and made me feel sickly, with my mom there it wasn’t that bad.

The rest of the weekend was also really enjoyable, and my mom helped me do some errands I have been putting off forever due to feeling icky and having no energy. We went bra shopping. We went to Target and bought me some slippers to wear around the house since me feet are always cold these days. She did the driving when my feet were feeling too cramped and sore to drive. She helped me do some laundry I have been neglecting. She cooked me my favorite Polish food for dinner. It was awesome.

I don’t think I’ll ever be too old for a little mommy & me time. Thanks so much, Mom!!

Spam

Remember how I went through all that trouble to work up the courage to tell my friends and family about this blog? And how that was sort of a big deal for me? Well, I guess I didn’t realize that if your blog goes from being a semi-private diary read only by your boyfriend and one college roommate to an interactive blog that people are actually clicking and commenting on in a single day, that gives your blog the characteristics of a spam blog. So, while I was delighted to receive some comments on my previous posts, I was less than delighted when I visited my own blog and received the following message:

“This blog is currently under review due to possible Blogger Terms of Service violations.”

Huh? I’ve violated Blogger Terms of Service by sharing difficult emotions with my friends and family? Actually having people read my blog makes me look like a spammer? I seriously apologize to any friends or family who followed the link I sent them only to get that message. It’s sort of embarrassing, to be honest.

And I have to admit that I was even less delighted to discover that the “possible violation” led to my blog being locked for two days – meaning that I was unable to publish any posts during that time. Unfortunately, I feel like the momentum I had going, which wasn’t easy to come by in the first place, has sort of been lost. I was just starting to get into a habit where I was writing stuff down that was troubling me when I had my venue blocked for a couple of days for no apparent reason. It was pretty frustrating.

So, if you still happen to be reading this, please bear with me while I see if I can make this work again.

Courage

When I first got diagnosed with RA, aside from APL and a couple of friends I saw on a regular basis, I literally hid from the whole world for a couple of weeks. For some reason, it was extremely difficult for me to tell people about the diagnosis, probably because it required me to explain all the unpleasant details I hadn’t even figured out how to accept for myself. Not to mention that telling someone you’ve been diagnosed with a degenerative and painful autoimmune disease is generally followed by an onslaught of well-intended pity that only ends up making you feel worse. So, somehow the courage to be honest with people – even people I really care about and who I know care about me – eluded me for weeks.

On the other hand, interacting with people who didn’t know about my diagnosis also seemed impossible. I felt like my life had been flipped upside down and inside out. Everything in my world revolved around figuring out how to deal with the RA, so how on earth could I talk to someone who knew nothing about my diagnosis? How could I talk to them at all if I didn’t have the courage to tell them? The ideas I came up with for answering the innocuous “how’s it going?” without mentioning RA were basically downright lies. So I hid. I withdrew myself almost completely from interaction with the world.

After a week or two I was desperately lonely. I realized I had to let people know so that I could build a support system to help me get through all of this. But, for some reason, I was still having an extremely difficult time making the words “I’ve been diagnosed with rheumatoid arthritis” come out of my mouth. So I told my mom, and I asked her to tell the rest of the family. I found it was easier to talk with people once they knew about the RA, even if I wasn’t brave enough to tell them myself. My mom told my sister and brother and my aunt. My aunt put me in touch with my cousin, who also has RA. And my support system slowly started to grow. With a little practice, telling people started to get easier. Or, at least, it wasn't quite as hard.

One particularly bad day in July, feeling lonely and sick and dealing with a great deal of pain, I finally managed to email a few friends from high school and college and tell them about my diagnosis. I’d like to think it was courage that finally got me to send those emails, but in reality it was probably cowardliness. I was afraid of what would happen to me if I kept trying to deal with this alone. Either way, I was immensely relieved that I had gotten my out-of-state friends involved.

A dearly loved college friend, AJ, offered to gather a posse to attack RA! She said we would fork its yard! Tie-dye its lawn with froot loops! Give it a wedgie in the hall! Put vasoline on its doorknobs! Her humor and enthusiasm lifted my spirits more than I can say. But when I explained to her that my hands were in such bad shape that vasoline on a doorknob was actually terrifying because it could lock me in a room for eternity, she got a bit more serious with her suggestions.

AJ suggested that I start a blog. Originally, I wasn’t so sure about it. She has her own blog, called “A Taste in the Life” (it’s listed in “My Favorites” to the right). She is a fantastic writer; she studied it in college and now she writes for a living. And since her engagement at the beginning of August, her blog has become a hilarious account of the trials and tribulations of planning a traditional southern wedding while keeping her own modern flair. It’s basically guaranteed to be an entertaining read and it is always uplifting.

I didn’t think any blog I wrote would be like that. Mine would probably complain about how much my body hurt and how despondent I was feeling. Who would want to read that? But AJ patiently explained to me that she didn’t start writing her blog for anyone else – she started it for herself, a form of cheap therapy to work out whatever was spinning around inside her head. She said she thought that would be good for me. She said I wouldn’t have to show it to anybody if I didn’t want to.

So I took her advice. One afternoon I sat down and starting writing and here it is. I have to admit that even if these posts are a little depressing or frustrating to read, working through these issues paragraph by paragraph has actually helped me to relax and settle my mind a bit. So I think writing the blog has been a good thing for me. The only weird part has been the issue of who to share the blog with.

At first, I only shared the blog with APL and AJ. AJ said she was proud of me for starting the blog, but that she wouldn’t list my blog on her “favorites” if I didn’t want her to. This led me to a very weird realization: it wouldn’t bother me if she listed my blog on hers because anyone following that link would be a total stranger to me. That means the thought of anonymously telling my problems and fears to total strangers didn’t bother me. The part that actually scared me was the idea of sharing my problems and fears with the people I know and love. But that made no sense at all! I’m afraid to tell my own friends how much I’m suffering? I don’t want my own friends to know how scared I am? Why not?

It made me start thinking about the “non-judging” attitude from my Mindfulness Class. Maybe, just as we are constantly judging ourselves, we are constantly judging each other. Dealing with RA makes me feel weak; like I’m somehow less than myself. Was I worried that my friends would read my pains and fears and judge me? That it might change their opinion of me? Because, the truth is, ultimately my friends may need to change their opinions of me in order to begin to understand everything I’m going through. If I want to have them there to help me through this, shouldn’t they know what is going on with my body and inside my head? With a better understanding of this RA conundrum from all perspectives, maybe we can all find a better way to help me handle it.

Unfortunately, lack of courage is still the issue here. I came to the conclusion that I should share my blog weeks ago. But for seven previous posts I somehow wasn’t able to find the courage to let my friends and family know that this window into my life even existed. I’m still not sure I have the courage to do it, but I’m going to do it anyways. As the Cowardly Lion said, “If I only had the nerve.” So here’s the nerve: right after I publish this post, I’m going to send an email to my friends and family with a link to this blog and tell them that, if they are interested, they are welcome to read it. It isn’t a cry for help and hopefully it won’t lead to any unfair judging about what I’ve been going through. I just hope it will increase openness and understanding with the people I care about and make it easier for all of us to get through this. I never really understood this phrase, but: here goes nothing.