Trying to Un-bite What It Turns Out I Couldn’t Chew

--> Although I’ve spent practically a year non-stop thinking about this problem, I still struggle almost daily with the limitations – physical, emotional, and mental – that RA puts on my life.
At the beginning of the semester I was doing really well. I was only experiencing relatively small amounts of pain on a daily basis. I had more energy than in the past year. I was exercising every day and even loosing some of my prednisone weight-gain. And, as my ridiculously over-organized Type A personality had basically been on hold all spring during my semester off , I can’t even begin to explain how good it actually felt to get back to work and school. I have to admit that I felt more like me than I had in a long, long time.

Unfortunately, I’ve had some trouble since then. For one thing, the conference I am planning for work has turned out to be WAY more work than I really intended to sign up for. And though I have delegated everywhere I possibly could, it still takes a lot of effort to keep track of what everyone else is doing. So I am spending a lot more time on the conference than I originally intended to. However, I do think the networking and resume material will be worth it in the end. Plus, for the most part, I really enjoy the work.

Not to mention the conference will be over in October. I thought I had planned well enough because I knew the beginning of the semester would be a little crazy with the conference. But what I didn’t plan for was all this hand pain. I’m still assuming the pain started with overuse at the wedding about two weeks ago, but that’s mostly because I don’t like the alternative explanation: that my treatment isn’t working as well as we thought it was. I'm not ready to start the trial-and-error drug trials again. Either way, when is this hand pain going to let up? It is really causing me trouble in getting anything done. Consequently, I am behind in all of my classes. And if the semester keeps up this way, I'll have trouble keeping up even when the conference is over.

So: I am forced to admit: I have bitten off more than I can chew this semester.

Solution: I dropped a class. A “W” will appear on my transcript, but I guess with a whole semester missing one “W” is not that big of a deal. I am trying to take some solace in having the strength to admit that I took on too much, and having the courage to cut back on my commitments before it is too late. But I still feel pretty bummed about it.

Plus, my hands are still killing me.

I've had better days.

Bad Hand Day

The Good: Being awarded $27,000 in law school scholarships.

The Bad: Having to attend a scholarship recognition ceremony on a very bad hand pain day. Did you know that there is literally NO polite way to meet people without shaking hands? And of course it is considered good manners to have a firm handshake....

That networking hurt. Literally.

Dilemma

This morning, for some reason, I was crying before I even managed to get out of bed. I honestly don’t know why. Guess I was feeling pretty tired and overwhelmed even though it was only 7:30am, which sucks. But, with some kisses from River and a promise to buy me a latte from APL, I managed to get out of bed and get myself to class. But, unfortunately, the trouble didn’t end there.

Dilemma #1: My hands are still hurting so note taking was difficult in class this morning. Luckily, my rheumatologist has given me vicodin for just such situations – where I need the pain to stop rightnow so I can get something done. So I took a vicodin. But, I guess since my stomach was pretty empty and I was already exhausted and sort of out of it to begin with, the vicodin made me a tiny bit loopy. So then I couldn’t seem to pay attention to what my professor was saying, which defeated my ability to take notes anyways.

Dilemma #2: My hands are still killing me. They have been hurting pretty badly since the wedding where I helped with the flowers. I felt great that day and helping with the flowers was a lot of fun. It was also really rewarding to see the wedding come together so beautifully with my help. But I guess I learned a lesson: Even if I’m feeling pretty good, I simply cannot spend all day trimming flowers, using scissors, taping, gluing, and tying ribbon. It’s just too much for my hands. I have to find some other way to help instead. You’d think I would have figured that out by now, but I guess not. So I made a mistake.

So, the dilemma becomes, now what? What do I do now to get my hands to stop hurting? Vicodin only helps the pain a little bit, and has side effects. APL and I have tried some “joint rubs” but all they have seemed to do is make my hands smell funny. So I guess what I need now is rest. But how do you rest your hands?

You use your hands for EVERYTHING. There isn’t one thing you do all day where you don’t use your hands. I need my hands for note taking in class. My job consists primarily of emailing people and making lists on my computer. I like to read blogs and look at Facebook for leisure, and even that requires clicking and scrolling. Sometimes I like to play video games to relax, which requires hands. You need your hands to cook, to eat, to open doors, to carry things, to hold open the book you’re reading. You even need your hands to zip up your pants! And, as much as I would perhaps like to, I don’t have time to sit around watching movies with my hands on my lap all day! I have too much work to do! But, on the other hand (ha! wish I had some other hands!) how on earth am I supposed to get my work done with this much pain in my hands?

Dilemma. I'll take suggestions if you've got 'em. Because I am all out of ideas.

Hand Hurt

My hands hurt. A lot. Too much to type about it. ~;o(

Little Z vs. The Vampires

I just talked to my mom on the phone. We were talking about my last blog post, and my mom told me I was brave for even considering dealing with the needles myself. Then she reminded me how I used to deal with needles when I was I kid:

When I was little I had to get blood drawn every once and a while for my original autoimmune problem (hypothyroid disease). My mom said I used to hide in the closet when she tried to take me to the doctor. Then, when she finally got me there, I would call the nurse a vampire and tell them that they only got one bite!

So, yeah, I guess I've made some progress since then.

To Syringe or Not to Syringe?

On Wednesday I had an appointment with my rheumatologist. I think it may have been the first time ever that I have been able to report to him that I am actually doing pretty ok. I mean, my joints still hurt every day, but usually they don’t hurt as much as they did a year ago. I still wish I had more energy, but at least I have enough energy to get myself out of bed and back to class. I still get tired way faster than everyone else my age, but at least I have enough stamina now to do some of the things I enjoy. I know “ok” might not sound like a victory, but it sort of feels like one to me. Compared to the last year of my life (which, let’s face it, sucked a very great deal), I’m actually pretty happy with the way things are going right now.

Don’t get me wrong – I still have pretty bad days once in a while. Yesterday was one of them. On top of me still feeling quite tired and sore from the wedding last weekend, it was a really long day of work and class. There were some really good things about yesterday: I got to see a classmate’s very first ultrasound and meet another classmate’s seven-month-old little girl, which was wonderful. I love babies and I am so happy and excited for both of them. But, considering my current level of exhaustion and soreness, it really got me thinking about how I would ever be able to be a mom myself, feeling like this. Later that evening, I was trying to help APL change the sheets on our bed, but my hands hurt so much I could barely pull the sheet over the corner of the mattress. Combined with my worrying from earlier, the fact that I was having trouble doing such a little thing made me burst into tears. I cried for at least half an hour over how unfair everything felt at that moment.

So, while things are certainly better than they used to be, I have to admit that I still have a lot more trouble with pain and fatigue than I would ultimately like. When I met with the rheumatologist the other day, I told him as much. He said that there are still some changes we can make with my meds that may cause additional improvement. On the one hand, I don’t really want to mess with my meds too much, since for the most part I am doing ok and I am mostly able to get back to my own life. I really wouldn’t want to make a change that might make things worse. But, on the other hand, less pain and more energy would really make a big improvement in my life.

Unfortunately, I’m not sure that I’m all that thrilled with the next step my rhematologist suggested: injections of methotrexate. By syringe.

Methotrexate is basically the RA drug. The way I understand it, if you have RA, you are pretty much on methotrexate. It prevents joint destruction and it usually compliments the other treatments, like Remicade and ENBREL. I have been on it pretty much since I was diagnosed. Currently, I take six pills of methotrexate once a week. But, since people’s bodies absorb pills in different ways, it makes sense that an injection might produce better results. Still…that syringe.

Now, I know I have injected myself with ENBREL 17 times already. But ENBREL comes in an auto-injector, like a big fat pen. I just push it against my thigh and press a big purple button. Then I hold my breath for the 15 seconds it takes for the medicine to be delivered. (Quite honestly, it is the longest 15 seconds of my life every single week!) But all I have to do is push a button. I never even see the needle.

Methotrexate doesn’t come in an auto-injector. You have to use a regular syringe. Which means obvious needles. First you have to stick the needle in the bottle and fill the syringe with the right amount of medicine. Then you have to stick the needle into your leg. Then, as I understand it, you have to pull back on the stopper a tiny bit to make sure you didn’t hit a blood vessel. And then you have to plunge the stopper yourself to dispense the medicine. It’s a pretty different process than simply pressing a big purple button. And much more needle-intensive.

Ultimately, I know that I can handle the syringe (or make myself handle the syringe) if it is really going to make me feel better. But it still gives me the jibblies. For the time being I am sticking with the pills. When I run out of pills, I’m hoping I’ll feel brave enough to try the syringe and that it will be worth the extra trouble.

Mawiage Is What Brings Us Togever Today

This past weekend I was lucky enough to be involved in an absolutely beautiful and amazingly fun wedding. Two of my friends from law school got married – and they asked me to officiate the ceremony! Of all the weddings I have been to (five this year, two last year, one the year before) this is the first wedding I was ever involved in! I found it really rewarding to be involved in something so special. I read a ceremony that the couple had written themselves, and instead of a Bible the ceremony was pasted into The Lorax, which was so much fun! It was a really perfect weekend, and though I have to admit that I am paying for it with a lot less energy and a bit more pain this week, it was 100% worth it. So, to PN&AN, thank you so much for letting me be a part of your special day!

Caveat

I said in my last blog post that I can do anything. I know this is true. However, as I've re-discovered for what seems like the millionth time this week, that statement comes with a caveat: I can do anything, but I can't do everything.

I’ve changed my lifestyle a lot since I got diagnosed with RA. I used to be involved with absolutely everything that remotely interested me – and when I say involved what I usually mean is in charge. I was also really bad at saying “no.” Whenever my boss asked if I could do something else for him (on top of the millions of things I was already doing) I always said yes. I always said yes when friends asked for favors too. I did everything, and, somehow, I almost always managed to do it well.

But my abilities changed drastically since getting diagnosed with RA. Perhaps my very biggest struggle in adjusting to this disease has been to figure out – and follow – my new boundaries. I still want to follow my dreams and do enough to feel like myself, but I’ve also needed to accept that I simply can’t do as much as I used to and I shouldn’t do as much as I used to.

This hasn’t been easy. I’ve had to re-evaluate my priorities. While I used to have school and work squarely at the top of my priorities list, now I always have to remember to make time for doctors appointments. I have to make time to figure out health insurance and save energy to fight with student health when necessary. I also have to make time to deal with all the problems my immune system keeps throwing at me: cold sores that never go away, bizarre skin infections, the infamous boob wound, and ordinary illnesses that affect me more than they would affect a healthy person.

I’ve had to put priorities and desires on hold to deal with hip pain, shoulder pain, jaw pain, hand pain, and lots and lots of foot pain. I have to remember to try to fit in time for exercise and weight loss, despite whatever pain I might be experiencing, because overall it will help with my health. It has been really hard sometimes to admit when I’ve reached my limits and give up on things I wanted to do.

I know that I have improved a lot in dealing with my boundaries. I now take the time to think about every decision that I make before committing myself to doing something. I say no to my boss and, unfortunately, my friends on a regular basis. I am able to put schoolwork aside to deal with my health without feeling guilty if the situation calls for it.

However, this past week has demonstrated to me that I still don’t quite have a handle on how to balance everything. It was an extremely busy week. School has started again and I am taking five classes. I need to have the reading completed for the majority of the week by Tuesday evening. I also volunteered to be “on call” in one class on Tuesday. And I am in charge of a huge conference for work and I had to attend four meetings last week. I also had two doctor’s appointments.

I know the paragraph above probably sounds insane, but I honestly thought that the decisions I made last week were well reasoned. I may be taking five classes, but two of them are only 2 credits and one of them ends in October, so the course load is not really that bad. I know I had to read more closely to be “on call,” and that takes more time, but now that is out of the way for the rest of the semester. I may have had four meetings for work last week, but the meetings were with volunteers who will be helping me, so it was necessary to meet with them to delegate some responsibility to them. And obviously doctor’s appointments need to be a priority.

While I did make it through the week – i.e. I managed to get done everything I needed to – I am only realizing now that it was too much for me. It’s weird because I have to admit that it feels really good to be back at work and at school. It feels good to be doing things I love and things that I know I am good at. I honestly feel more like myself than I have in a long time. My life feels more like my life than it has in a long time.

But, all the same, I am forced to admit that last week was simply too much for me. I have totally crashed over the weekend, even resulting in me getting extremely cranky with APL yesterday over something relatively minor. While I made it through the week, now I feel like I have been run over with a steamroller. I am just so tired. Now I am paying the price. So even though I thought I done a good job limiting myself, I guess the truth is that I still have some details to figure out.

I guess I have to admit that I still have some work to do in figuring out who I am and what my life is now that I have RA.

My Great Wall

This morning I woke to find a beautiful email from a complete stranger in my inbox.

She had been looking for info on arthritis on Facebook and stumbled across this blog. She told me that she spent hours reading all of my entries. RA has greatly affected her life as well, so she thanked me for my words and told me that my story had touched her.

In the end, she pointed out that a month and a half had gone by without me updating this blog and said she was worried that my silence meant my health had gone downhill.

Well, for once I have good news!

The reason I have been neglecting this blog is that I have been feeling a lot better and so I have actually been really busy! For the most part, I spent just over two weeks in CHINA with my mom!! And I guess it’s about time that I write a blog post about that trip. ~;o)

To be honest, I was extremely nervous about the trip to China. I love to travel, and I’ve always been really adventurous, but this was the first major traveling I had done since being diagnosed with RA. Mostly, I was worried about my stamina, which is so much less than it used to be. I was worried that I was going to be too exhausted to enjoy myself, that the amount of activities would be overwhelming, and that I would keep my mom from enjoying herself too. I was also worried about how I would keep my ENBREL cold the whole time (since it needs to be refrigerated) and I had a lot of general concerns about my compromised immune system in a foreign country.

But, despite all these worries, I really surprised myself by somehow coming up with a lot more stamina than I ever thought I could. Don’t get me wrong – even though I was the second youngest person on the trip I still got tired far more quickly than everyone else. I found myself going to bed while the rest of the trip stayed up drinking. There were definitely days when I ached a lot – where my feet hurt too much to explore or my fingers hurt too much to use chopsticks. But I think my major accomplishment was that I didn’t let these setbacks stop me from enjoying myself. I just accepted them and tried to enjoy all the little things that I could do. And my mom and I both really enjoyed ourselves.

We started in Hong Kong, where my mom and I spent a couple days wandering around the city and seeing the sights. Then we flew to Guilin where we cruised up the Li River, which had some of the most beautiful scenery with jagged mountains, bamboo forests lining the riverbanks, and hundreds of fishermen on tiny bamboo rafts. On the cruise, my mother tried some snake wine (i.e. wine that literally has a dead snake floating in the bottom.) Supposedly it is an ancient cure for rheumatism, but I wasn’t brave enough to try it. Snakes give me the jibblies!!

Yangshuo was probably my favorite place of all. We saw a light show that featured 300 villagers each navigating their own fishing raft or wearing a costume that lit up in unison. We took a bike ride through the countryside and saw farmers in their rice patties. We even took a cooking class where we visited the market and then cooked local dishes. Though my fingers were bothering me that day and I needed some help with the vegetable chopping, the cooking class was still one of the highlights of the trip!

Then we spent three days on a cruise boat going down the Yangtze River through the Three Gorges. There was good and bad for me when we were on that cruise. The good is that I managed to walk up hundreds of steps in sweltering heat to get to see a temple. I didn’t think I had the physical stamina to do something like that, but somehow I did it. And it was totally worth it because the temple was beautiful. The bad part is that one night I got a horrendous nosebleed. It literally filled the sink with blood for an hour until my mom got freaked out and called the tour guide, who got freaked out and called the boat doctor. Who knows why I got the nosebleed. My immune system sucks? Exhaustion from hiking to the temple? General body failure? Needless to say that was less than a pleasant evening and I was pretty headachy (from blood loss?) the next day. At the end of the Three Gorges cruise we got to see the Three Gorges Dam. Honestly, I have to admit that it wasn’t as impressive as I expected.

From there we flew to Shanghai, where we explored the city and saw some amazing and seriously insane acrobats. Then we took an overnight train to Xi’an – and I actually thought the overnight train itself was a lot of fun. In Xi’an we explored the Muslim Quarter and got to see the Terracotta Warriors, which were amazing. There are thousands of them and they have individual facial features! Then we took another overnight train to Beijng, where we saw the Forbidden City and the Temple of Heaven, both of which were very beautiful.

The last thing planned on the trip was a 6 mile hike along the Great Wall of China. I was really worried about this section of the trip. Would my knees hold up? Would my toes and feet cramp? Would I have enough energy? What would I do if I got halfway through and felt like I couldn’t go on?

But I surprised myself again with my endurance. Don’t get me wrong – it was HARD. First of all, the Great Wall goes up and down and up and down and up and down about three hundred million times. Sometimes you are on really steep steps, sometimes really shallow steps, and sometimes just steep slopes. It’s rugged and rocky and you always have to watch your step. It’s a real workout no matter what kind of shape you are in. Everyone was sweating buckets – even the locals.

I had to take a lot of pain pills to get me through that day. And I do mean a lot, because it was really difficult on my joints. Also, when we got to about mile five, my legs were shaking so badly from the pain in my joints that I could barely walk. I think my mom was worried I wasn’t going to make it to the end for a while. And it must be admitted that while I made it to the end of the hike, I was totally wrecked for several weeks after I got back to the U.S. The night I got home I was jet lagged and couldn’t sleep, but I was in so much pain I couldn’t bring myself to move even to try to make myself more comfortable.

But I did it. I hiked the Great Wall of China.
And I did it only one year after being diagnosed with RA.

If you had asked me a year ago whether I could have taken this trip I would have said absolutely not. I probably would have told you that I would never really travel the way I wanted to again. But I think life has a way of surprising you, and that you really have a way of surprising yourself. I’ve discovered that if you really want something, if it really matters to you, you’ll find a way to make it work. It might not be exactly what you thought you always wanted, but you’ll find a variation that you can really enjoy. Perhaps you even appreciate it more this way.

Like the beautiful email I got this morning reminded me, there are so many simple things in life that I now find pleasure in that I might have overlooked had it not been for my RA. While a trip to China is probably a once-in-a-lifetime experience for just about anyone, for me I think it meant even more because of what it represented to me. Realistically, I know there are probably still more health troubles to come for me in my future – in fact, I have already had some since my return to the U.S. I know there will be more hurdles and more disappointments and more trial and error and more frustration and exhaustion. But I think I have found, at least a little bit, some patience to get through it all while still looking on the bright side.

After all, when things get rough, I just have to remind myself: I hiked the Great Wall of China. I can do anything.

The End of Gluten-Free

After six months of diligently avoiding all gluten, I've decided that my gluten-free journey has come to an end. To be perfectly honest, I don't think the gluten-free diet has had any direct effect on controlling the RA. I've been experimentally eating gluten again for about three weeks and I'm still feeling fine. Since I have so many other health-related issues (and eating gluten-free is a lot of work) I decided not to do it anymore.

But I did learn a lot from my gluten-free experience. It taught me to pay attention to all the food I put in my body. As a result, we have adopted much healthier general eating habits. Being gluten-free also helped me adjust my attitude in order to make the major life changes that have been necessary to adapting to living with RA. The other blog was also a fabulous project for keeping me sane while I was out of school!

For anyone who still is gluten-free, hopefully Gluten-Free From A to Z can still serve as a database when it comes to purchasing gluten-free products.