Thursday, November 27, 2008

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!

Saturday, November 22, 2008

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.

Friday, November 21, 2008

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.

Wednesday, November 19, 2008

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.

Thursday, November 13, 2008


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

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…

Wednesday, November 12, 2008

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.

Monday, November 10, 2008

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.

Sunday, November 9, 2008

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?

Friday, November 7, 2008

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

Monday, November 3, 2008

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!!!