I Am A Little Black Rain Cloud

Today, River woke me up at 8:30am by vomiting on the floor. I had to jump out of bed to clean it up before it soaked into the carpet, which was no easy task for me (the jumping or the scrubbing). Then I opened the bedroom door so River could go downstairs, in case she still felt sick. But I guess the little sicky was feeling better because she hopped back up on the bed and went straight back to sleep. So I followed suit and we slept until noon. At least she didn’t barf on the bed.

I really am trying to focus on the things I still have to be happy about. And I am objective enough to understand that in the process of figuring out how to live with my RA there’s going to be ups and downs. And I know that things are generally progressing in the direction of “better,” albeit slowly. I know all this.

But, unfortunately, even having that mindset doesn’t make the sucky days suck any less. Or the sucky weeks, for that matter. And this has been a sucky week. I’ve been feeling icky and sad. Yesterday the biggest thing I accomplished was walking to the mailbox to pay a $539 hospital bill. I did nothing else other than feel gross. On Sunday, APL and I had invited people over for game night, but when people arrived I felt so disgusting and antisocial that I couldn’t even bring myself to go downstairs and face people who are our friends. The little projects I have started for myself have held no interest. I've lost my appetite. And I don’t know how to snap out of it.

I guess I'll snap out of it when I start feeling a little bit better, which hopefully will be soon.

Some Days

This morning I woke up crying. I can’t tell you why because I’m not sure I know exactly myself. It probably had something to do with the fact that I’ve felt icky and exhausted for many days in a row now. And maybe the fact that I have been to the doctor’s office four times in the last week and all of those visits were extremely unpleasant. And maybe the fact that today is Sunday, the day I take my dose of methotrexate (which usually makes me exhausted), and I can’t imagine feeling any more exhausted than I already do right now. And I just woke up.

Some days with RA are not very nice days.

Although, I guess if I have to wake up crying I’m at least glad that I did it on a weekend when APL is home. He brought me a chai in bed and I feel a little bit better now.

The Day My Boob Wound Was Forgotten

Warning: This post contains details about my compromised immune system that you may consider to be too much information. Don’t say I didn’t warn you.

This morning, I had an appointment at Student Health at 10:15am to get the stitches removed from my boob wound. As requested by Student Health, I arrived promptly at 10:00am, fifteen minutes early, so I could get checked in and not delay my appointment time. By 10:10am the nurse had checked me in and I was sitting alone in the exam room, waiting for the doctor.

Half an hour later, I was still waiting alone in the exam room when my phone rang. It was RK, calling to see what I was up to. I told her I was stuck at Student Health, waiting to get my stitches out. She suggested that I run down the hallway, flashing my boob and asking whoever looked to please take care of my medical condition. Forty-five minutes after hanging up with her, I wished that I had gone running topless down the hallway, just to get someone to let me know that I hadn’t been totally forgotten all alone in that room. After waiting more than an hour, the stitches removal procedure took literally four minutes.

Now, I know that the doctors are working hard and doing the best that they can to take care of everybody in a timely fashion. And I also understand that sometimes medical emergencies arise that requires less urgent appointments (i.e. boob wound stitches removal) to be triaged. But, on the other hand, it really wasn’t easy for me to get out of bed this morning and be at my appointment on time. Especially since I’ve been having sort of a rough week in general – feeling really tired and just generally sort of icky.

This morning, since my alarm went off at 8:30am so I could get to my appointment on time, River was too sleepy to do her usual “help me wake up” routine. She just grumbled as if to say, “It’s not time to get up yet, Mommy,” and then rolled over and went back to sleep. And how I wanted to join her! Instead, I hit snooze for an hour and then used what minimal willpower I had to force myself out of bed, into the car, and into the doctor’s office on time. So I was a little bit frustrated (and exhausted) to have to sit for over an hour for an appointment that took less than five minutes.

NOTE: Before reading the next paragraph, please knock on any wood that is in your immediate vicinity!! Thank you.

The good news is that the doctor says my boob wound is healing and I shouldn’t have any more problems with that particular infection. The other good news is that I seem to be not too much worse off than before the Boob Wound Saga of 2009. That is, aside from the area around the boob wound turning a deep shade of purple (I bruise really easily) and another pretty painful bruise on the back of my neck (from slipping when I tried to wash my hair under the bathtub faucet when I couldn’t get the boob wound wet.) So, as soon as those bruises fade, hopefully we can forget the boob wound ever happened. Which I'm sure, dear readers, you will all be delighted about. ~;o)

My Little Family

I couldn’t resist posting this adorable picture of APL and baby River (River's about 10 weeks here.) I told you she was the cutest floppy black puppy you’ve ever seen!

I love my little family so much. They keep me smiling when I feel tired, achy, and sad. I don’t know what I would ever do without them.

River

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

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

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

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

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

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

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

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

February 18th

Happy Birthday, APL!

I am so grateful to have you in my life.

Stitches

Warning: Fairly disgusting compromised immune system details below!

I never thought my first-ever stitches would be in my boob. Unpleasant!

We Laugh In The Face Of Disaster

We don’t celebrate Valentine’s Day. In the six years APL and I have been dating, we’ve never celebrated it (with the exception of a few gag gifts, like the “prisoner of love” boxers I once bought APL that I never thought he’d actually wear. But of course he did. He needed clean underwear, he said. Didn’t want to do laundry, he said. I guess I should have figured!) In any event, we’ve got nothing against people who enjoy Valentine’s Day. But we decided early on that we’d rather do special things on days that have more personal meaning to us, like our anniversary or birthdays. Alternatively, we’re also huge fans of spontaneity. So neither of us is into buying mushy presents and lighting candles in February just because Hallmark says we should.

Thus, the relation between our recent romantic hot springs getaway and Valentine’s Day was purely a coincidence. APL didn’t have to work on Friday, so we jumped at the chance to take a spontaneous mini-vacation. And, because it happened to be Valentine’s Day, we found a what we thought was a great package deal at a old hot springs resort about an hour from home. It included a room, dinner, hot springs, and discounts on massages. Sounded great to us!

Instead, it was a total disaster! If we had been a couple looking for a perfectly romantic and relaxing Valentine’s getaway we would have been hugely disappointed. Luckily, we laugh in the face of disaster!

To start with, we were going to a hot springs resort, but I wasn’t actually allowed to get in the hot springs (on the doctor’s orders). Then, the first night at dinner the waiter looked at me like I had four heads when I asked for advice about gluten-free ordering and was actually downright rude when we asked him to check ingredients with the kitchen. When they brought me my buffalo cheeseburger sans bun, it was also sans cheese. Instead of taking my burger away to melt the cheese, they brought a cold slice of cheese on a plate. Highly appetizing.

The next morning we awoke to the sounds of the couple next door to us having a screaming fight. Their voices were barely muffled through the paper-thin walls of the old inn. (Apparently, he called her fat and/or ugly and totally ruined their vacation, just like he ruined Christmas and her birthday.) After witnessing the morning soap opera, when we went to check in to our private mineral bath, there was a line of people out the door. The “system” that the old resort is using for scheduling seems to consist of hundreds of little scraps of paper and eight highlighters. It took twenty minutes any time we needed to talk to someone at the desk. And after all that I could only put my legs in the mineral bath.

Then, somehow the resort hadn’t realized that a “couple’s massage” requires a room that fits two massage tables and four people. Instead, we were squished into this tiny room. Halfway through the massage my headrest fell off and I had to contort my body so as not to display my bare boobs to my therapist while he tried re-attaching the headrest. After our massage, APL had arranged for me to get an extra half hour special head, neck, and scalp treatment, but the therapist had no idea what APL had ordered and just continued with a regular massage.

After dinner that night (which was delicious gluten-free pizza and gluten-free beer – thank you Beau Jo’s!!) we thought we would just relax in our room. But we learned that our fighting neighbors (who had bailed out after their fight) had been replaced with a group of loud guys, including one with a laugh like a drunken deranged hyena that kept us from falling asleep.

Warning: Fairly disgusting compromised immune system details below!
The next morning (on actual Valentine’s Day) as we were checking out, we realized that the resort hadn’t discounted one of our massages like they were supposed to. So after waiting in a line for twenty minutes to check out, we spent another half an hour arguing with them about the discount. Finally we hurried down the mountain to Student Health to have my boob wound rinsed (which was painful) and re-packed (which was also painful). Early return from hot springs to deal with Valentine’s Day boob wound? Awesome. It sounds like a story from the worst Valentine’s Day ever contest, doesn’t it?

But while it certainly sounds like a total disaster, APL and I actually laughed our way through the whole thing and ended up really enjoying ourselves. We lounged in bed and made up commentary and background stories to go with the soap opera we were experiencing. We daydreamed about getting hired to update and re-organize the resort’s antiquated scheduling system. We tried to loudly imitate hyena-man’s laugh in the hopes that he would hear us and get embarrassed. It was a bizarre trip, but we had a lot of fun with it.

Valentine’s Day tends to provoke expectations about romance where everything is supposed to be perfect. Ironically, those expectations could have had us bailing out early, fighting about who said what, or getting upset over rude customer service. Instead, we ended up laughing and happy. APL and I can almost always laugh in the face of disaster. And that’s one of the reasons I love him so much.

Immunity

Warning: This post is about the joys of having a compromised immune system. It’s going to get a little, um, personal. It’s also not for the squeamish. So why am I sharing it in public? Because, unfortunately, it’s part of my autoimmune journey. But don’t say I didn’t warn you!

My immune system is not, in fact, immune. With two autoimmune diseases, my immune system is actually quite confused about what the heck it’s supposed to be doing. And, since the Remicade is purposely confusing my immune system more so that it stops attacking my joints, it’s no wonder that infections have become a new and joyous part of my life. My immune system is so confused that it no longer seems to operate normally most of the time. For example, two little scratches that I got on my arm while canoeing last May left a scar because of my body’s inability to heal properly. Before the age of 25 I never had a yeast infection in my life, but now I have a standing order at the pharmacy to deal with them. (Told you this was going to get personal).

In October I was taking an antibiotic for a rash under my arms. It started out just as little red bumps, which I ignored for a while, figuring they were from shaving. But then the little red bumps started to spread out of my armpit and down my side and across my chest. At that point I told the rheumatologist about them, he gave me some antibiotics, and eventually the red bumps went away.

Months later, the little red bumps came back under one arm. Then they spread out until there was one on my boob. It didn’t hurt and it didn’t seem to be getting worse, so I ignored them for a while, hoping they would just go away. But they didn’t go away. Especially the one on my boob. So finally I went to see the doctor who gave me some more antibiotics. The bumps under my arm disappeared, but not the one on my boob.

One morning I caught a glimpse of myself in the mirror while I was putting my bra on and realized that the red mark on my boob had actually gotten worse. Bigger. Redder. It still didn’t hurt, but it looked like that scene from Mallrats (which I just watched last weekend with my brother and sister) where the boys go and talk to the crazy psychic that has three nipples. So back I went to the doctor. Again.

The doctor decided that my rash had become an infection and now needed to be “drained.” That’s right: cut open with a scalpel so the infected pus could come out. Gross. Gross. Gross. They did numb my boob before cutting into it with the scalpel, but having a needle in your boob is not a pleasant experience either. Luckily, the procedure went really well and the doctor thought that she managed to get it all clean. I think the doctor said that the abscess was about a centimeter deep, which is again: gross, gross, gross. They had to “pack it” with gauze and I have to go back on Saturday for them to check it again.

But the infection didn’t go down without taking some prisoners. Because I’ve had this procedure done (i.e. there’s an open wound on my boob) I am forbidden from getting my boob wet for a couple of days. No swimming or soaking. Which means that the romantic hot springs getaway that APL has planned for us (we’re leaving tonight) won’t be quite as perfect as we pictured it.

I’ve had to deal with quite a few disappointments since I got diagnosed with RA. Trouble using chopsticks. Missing the Obama rally. Trouble sewing. Missing snowboarding with APL. Not being able to eat pierogis and kruschiki because of the diet I am trying. I’ve become a lot better at dealing with disappointment.

I know that sounds sort of depressing, but I don’t mean it to. I’m adjusting to the fact that I simply can’t have everything I want in my life anymore. There are bound to be things every once and a while that I simply won’t be able to do, for whatever reason. Instead of brooding about my disappointments, I’m choosing to focus on what I still have to be happy about. I am disappointed that I won’t be able to get in the hot springs above my waist (the doctor did authorize me to put my legs in), but there are still plenty of things to enjoy about our little getaway: the massages we’re getting on Friday, gorgeous mountains, hot chocolate, outlet malls, dinner and relaxing. Holding hands with APL while we walk down the street. My immune system may not be perfect, but it is teaching me a good lesson: be grateful for what you have. And I am. Or at least I'm trying to be.

Chicago

I must admit that I’ve been sort of lax about updating this blog lately – primarily because nothing too exciting has been going on in my life. Since I temporarily dropped out of law/grad school, I’ve been catching up on a lot of stuff that got put off last semester. I finally sent in the paperwork and got the reimbursement for part of the cost of my very first Remicade infusion. I went to the eye doctor to discover that my vision has gotten worse yet again. I had checkups with regular doctors (i.e. not rheumatologists). I reorganized my closet. I gave the puppy a bath. Aside from these few productive things, I’ve mostly been resting and relaxing. And I am feeling a little bit better.

With this extra time on my hands, I decided to go and visit my sister in Chicago last week. My brother also flew out from Portland so the three of us could spend a couple of days together. Unbecoming of Chicago in the middle of February, it was about 50 or 60 degrees and gorgeous the whole time, which worked out really well for me and my creaky joints. We had an awesome time being tourists together.

It was the first time I had seen my brother since he turned 21, so we all went out and had a few drinks together in celebration. We took in the view from the 99th floor of the Sears Tower (which is the tallest building in America - taller than the WTC was, apparently.) We strolled along the lake and we saw a few of the winter exhibits at the Lincoln Park Zoo, which is a free zoo. Let me tell you, pygmy hippopotamuses are seriously adorable. We were disappointed that the beluga whales were on vacation while their habitat was remodeled, but we enjoyed the aquarium anyways. We sat on the couch together and watched stupid movies with my sister’s flat-faced one-eyed cat (you heard me correctly.) On our last night my brother (who just graduated from culinary school) made some amazing chicken enchiladas and I made some margaritas. It was a lot of fun.

I did discover that being gluten-free on my own, without the support of APL and RK who know the ropes, is a little bit more difficult than I expected. It was harder to pick through menus and ingredients lists without their help. And even though my brother and sister did their best to support and help me, I had a couple of disappointments. Chicago has a huge Polish population and my family is 100% Polish. One afternoon my brother and sister went to the Polish grocery store and brought home some Polish food that we have all loved since we were kids: pierogis and kruschiki.

Pierogis are little dumplings stuffed with various ingredients like potatoes, cheese, cabbage, sauerkraut, meat, or mushrooms. They were off limits for me because of the flour in the dumpling dough. Kruschiki are Polish cookies, sort of like long fried donuts covered in powdered sugar and, as a pastry, obviously made with flour and off limits for me. I was pretty sad that I couldn’t eat these treats. But my brother and sister were super sweet about it. They brought me some cheese puffs from the Polish grocery, the only snack they could find that was gluten-free, so that I wouldn’t feel bad. Unfortunately, the cheese puffs tasted like packing peanuts. So that was a little disappointing.

But, in good news, I discovered that my stamina and physical abilities have drastically improved from the early days of my diagnosis. We did a lot of walking while we were being Chicago tourists, including the slow kind of museum walking that is usually exhausting for everyone. We stood around waiting for trains and lingered through exhibits and spent several hours on the go without sitting down at all, activities that would have devastated me months ago. While my feet hurt a lot and my legs were really sore, I was really proud of myself for not slowing us down too much. I’m obviously not back in the shape I’d like to be, but I am making progress. And that feels nice.

However, I am still having trouble determining my boundaries and I did have a minor breakdown when I got back to Colorado. I was so exhausted that I got upset at APL over something totally stupid and the next thing I knew I was crying in a grocery store. We went home and I took a little nap and felt better, but then we watched a couple of episodes of House and there I was crying on the floor again. (Note to self: Show about people dying from serious illnesses probably not the thing to watch when feeling upset about my own serious illness.) After I got the second round of crying out of my system, we realized it was snowing and so we took the puppy out to play in the fresh snow under the streetlights and I found myself laughing. So I exhausted myself to the point of a roller coaster of up and down emotions. I still have a ways to go in figuring out my boundaries and understanding my weird emotions about this whole new life I’m making.

But, in the meantime, I’m really glad I got to spend some time with my brother and sister in Chicago.