Thursday, May 28, 2009

Stick It To Me

Today I successfully stabbed myself in the leg with a needle for the first time!!

Background story: Last Thursday I went to my rheumatologist’s office to start my new ENBREL treatment. (Again, don’t ask me why it is in all caps – apparently this medicine is still yelling at you.) Unfortunately, they didn’t have my dose available in an auto-injector that day, but they were anxious to get me started so that I can hopefully start feeling better sooner. Instead Nurse Connie gave me my first injection with a syringe in my thigh. It stung a little, but was relatively quick and painless.

Then Nurse Connie showed me how to use the demo auto-injector for when I do it myself in the future. She really took her time talking me through it and gave me some really good tips. She also gave me my official traveling case and documents, as I’ll have to carry the needles on the plane when I travel since the drug can’t freeze (which it might in the cargo hold). The drug can be in the carrying case with an ice pack for up to six hours, and then it has to be back in the fridge. This will make traveling a pain, especially road tripping or exotic locales. But if the medicine makes me feel better then I suppose it will be worth it.

As a side note, I have to say that Nurse Connie is a wonderful person. She always answers all my questions or is willing to find out the answer. She almost always calls me back the same day if I leave a message. And she has been an immense help to me over the past year in dealing with insurance and reducing expensive payments. For example, ENBREL is extremely expensive. While my Remicade infusions were covered as a “treatment,” giving me only a 20% co-pay (which was still hefty), ENBREL is classified as a “prescription,” giving me a 50% co-pay. This means that I will be paying around $800 a month for the drug. Worth it if it works, but otherwise a lot of money.

But Nurse Connie signed me up for a program where the drug company sends me the first month of ENBREL for free. I didn’t have to do anything at all. And then she referred me to a patient payment program, similar to the RemiStart program, where I should be able to get reimbursed for about $750 each month for the first year. Which will be long enough to see if it’s working. So when I left the office last Thursday, Nurse Connie told me my first month was on the way and that I should give myself the next dose in one week.

Of course, when this Thursday arrived there were no needles to be found at my house. I was about to call the drug company when, to my surprise, they called me. Unfortunately, they were calling to schedule delivery of my free month and the first available delivery was for next Thursday. So I called Nurse Connie to see what I should do, since these doses build upon each other and I didn’t want the first one to go to waste.

Luckily for me, Nurse Connie came through for me again. She provided me with an auto-injector from her supplies with the understanding that I will pay one back to her when mine finally arrive. This allowed me to get my second dosage on time. Which was awesome.

And so, this evening, I stabbed myself in the thigh with a needle for the first time. Well, technically I held down the pen and pressed the big purple button on top and the needle stabbed itself into my thigh. It was pretty easy to do, but since the auto-injectors are spring-loaded you have to wait about 15 seconds with the needle in your leg for all the drug to be delivered. This was painful, more painful than the syringe had been, and a very long 15 seconds. However, aside from it hurting a little, the whole process was pretty easy and I was pleased that I was able to do it without freaking out too much.

Hopefully I will be feeling better soon.

Wednesday, May 27, 2009

Find The Happy

The other day, APL and I had a big fight about something relatively unimportant. The one good thing about the way we fight is that we always fight to the end. We never leave problems or feelings hanging. We just keep going round and round in circles until we figure out where we were trying to go and come up with a solution that suits us both. Sometimes this tactic keeps us up way too late at night, but mostly I think it works pretty well for us.

This time, after we finished bickering, we sat on the bed for a while in silence. Then APL turned to me and said something that I already knew he had been thinking for a long time: that he wasn’t happy. He said he missed the fun things that we used to do together, like concerts and snowboarding, and that he didn’t feel like he had the ability to make me happy anymore. He also said that he hadn’t wanted to tell me this because he was so worried about me and he didn’t want to give me anything else to deal with. He said I had enough on my plate without his sad feelings weighing me down more.

But, somehow, his declaration had a completely opposite effect on me. Instead of stress or worry I felt…relief. Because I already knew that he was unhappy. I see, feel, touch, and taste his unhappiness every single day. I’ve been overwhelmed by guilt and frustration about how unhappy I feel I am making him. But when he said it out loud I instead felt less isolated and more connected to APL, a feeling I honestly have to admit I hadn’t realized I was missing. We are both unhappy right now, though I’m not sure how many people would know that.

Most of the time I think I am able to keep a pretty cheery disposition. I keep positive, keep my head up, get my work done, and pretend to enjoy myself. On the one hand, I honestly do think there is some truth in the self-fulfilling prophecy, and that acting happy and positive can help make me that way. On the other hand, deep down I have been pretty unhappy with my life lately. But I don’t talk about it much to many people (although I guess I do talk about my unhappiness a fair amount on this blog). But I don’t think many of the people I interact with on a daily basis realize how difficult the past year has been for me.

However, as little as people recognize my difficulty, I think they recognize APL’s difficulty even less. I don’t think people realize what a demanding and frustrating situation he is in. While I am forced to adjust to this diagnosis, because this is my body, he is not. He is doing this totally by choice - a choice he must make and remake every single day. He loves me even though our relationship has morphed into something completely different from the one he signed up for. He is working hard at accepting all of this and being supportive.

Despite everything he is dealing with, APL gives me strength every single day: strength to get out of bed when I feel like I had a battle with a steam roller and lost, strength to get through the day when fatigue hits me like a hammer, and even strength to relax when it feels like I’m being stabbed with a knife. How he finds the energy to keep me going is a mystery to me. Some days, I’m in awe of him. But with how much our lives have changed and how slow our progress has been, it makes sense that he would be frustrated and unhappy. However, I think that very few people can see that about him. And I’d be willing to bet he doesn’t talk about it much. With anyone.

For that reason I am truly grateful that APL finally found the courage to say out loud that he was unhappy. Somehow it made me feel less alone and strengthened both of us by making us feel connected. And now that we realize we are both unhappy with the current state of our life, those feelings somehow seem less monstrous. We’ve started talking about things we can try and change that might work better for us. We’re going to tackle the problem together. We’re going to find the happy – however we can.

Friday, May 22, 2009

Pain in the Hip

For the last five days it has felt like there is a knife stabbing into my left hip. It hurts no matter what position I am in – sitting, standing, laying, walking. Vicodin barely takes the edge off. I don't mean to complain, but such constant pain is exhausting.

Tuesday, May 19, 2009

My Dearest AJ

Last weekend I went to the fairytale wedding of my friend AJ in Florence, Alabama. It was a beautiful celebration of life and family, with my gorgeous friend AJ absolutely glowing with all the happiness in the world.

This evening I’m sitting at my computer, wiping back tears after reading an email from AJ telling me that her father died today – suddenly and unexpectedly. I can’t even begin to express my sorrow for AJ and her family. I want so much to be back in Alabama to surround her with hugs and give her my shoulder to cry on.

However, as I witnessed first-hand last weekend, I know that AJ has one of the most loving and caring families you have ever met. Her new husband and mother and brothers and sisters and nieces and nephews will all be there to hug her and hold her hand, even if I can’t be. I hope she will find strength in them and in all the love the rest of us will be sending her way.

And I am reminded that you should always count your blessings and rejoice in the health that you do have, even if it isn’t perfect. And you should remember to tell the people you love just how much they mean to you.

AJ, I love you and I will be here for you any time you need me. Always.

Doctor, Doctor, Doctor!

I feel like I spend at least 80% of my time these days dealing with doctors. Primary care doctors. Rheumatologists. Therapists. Calling the doctor to ask a question. Calling the doctor to report the latest and greatest failing of my immune system and ask what on earth I should do about it. Waiting for the doctor to call me back. Making doctors appointments. Dealing with insurance and paying doctors. Driving to doctors appointments. Waiting in the waiting room for doctors appointments. I swear I have at least one doctors appointment almost every week. It’s sort of exhausting.

So, when I helped my sister move from Chicago to Los Angeles, of course we had to detour through Boulder so I could get my weekly dosage of doctors appointments. After the wedding, I flew from Tennessee straight to Chicago and spent Sunday night at my sister’s apartment. On Monday morning we finished packing up her apartment and mailing boxes and then we started driving that afternoon. We spent the night in Nebraska and finished the drive to Boulder the next day.

On Wednesday morning I met with a psychiatrist for the first time. I’m not thrilled to admit that, but we’ve already established that this blog is about honesty, so there you go. The therapist I have been seeing recommended I meet with the psychiatrist. He said it was covered by my insurance and so what did I have to loose by trying? So I tried it. After filling out some paperwork and talking to the doctor for a while, he decided that I have “medical and grief-induced depression and anxiety.” The medical part is obviously from my RA and also from some of the drugs I am taking to treat my RA, and the grief part is from the loss of body function that I have experienced. Not exactly uplifting stuff. But, this doctor is an expert and maybe he can help me get myself a little bit happier, so I am keeping an open mind about it.

Later that afternoon I had an appointment with my rheumatologist, where we confirmed that there will be no more Remicade infusions in my future. Instead, we are going to switch to a drug called ENBREL. (Don’t ask me why it’s in all caps – apparently this drug is yelling at you.) ENBREL is in the same family as Remicade, as it is also a tumor necrosis factor (TNF) blocker. TNF is a substance that is made by your body’s immune system, and the theory is that people with immune diseases – like RA – have too much TNF in their bodies. Thus, by blocking some of the TNF you can theoretically reduce inflammation, pain, fatigue, and the other nasty symptoms of RA.

Of course, like Remicade, ENBREL has the same risks of making your body more susceptible to other infections and slightly increasing your risk of lymphoma. Hooray. But, since I got at least some benefit from Remicade, the theory is that another drug in this family might work better for me. Of course, it might work the same. Or it might work worse. Or not at all. We just have to try it and see.

The other delightful part about ENBREL is that it is a “self-injected” medication, which means I’ll have to deal with the needles all by myself. While there is actually a “syringe” option, apparently I will be given an “auto-injector,” which is like an epi-pen where you don’t even really have to see the needle. It’s supposed to be fairly easy to do, but I have to admit that I am a still a little bit nervous about it. Though I suppose if the drug really makes me feel better it will be totally worth it to figure out how to stab myself with a needle once a week. Right now my rheumatologist’s nurse is figuring out the insurance and the paperwork and in a few days I will go back in so she can show me how to give myself the injections.

After visiting my rheumatologist that day I had to go back to student health to get bloodwork done for my rheumatologist, because that’s the only way my insurance covers it. Luckily, I really like the guy who works in the lab at school. He knows me now, seeing as I’ve been in the lab almost every other week for a year now, and he is always super sweet to me. He gave me some advice about giving myself injections, which I really appreciated.

After hitting up three doctors on Wednesday I was miraculously feeling pretty good, so my sister and I decided to get back in the car and keep driving. We spent the night in Utah and made it back to my mom’s house by Thursday afternoon. Since then I’ve had a few days to rest and relax and spend time with my family and friends, which has been really enjoyable.

Unfortunately, I’ve also had a lot more pain than usual over the last couple of days, seeing as I am basically without treatment right now as we wait for the insurance stuff to go through. I don’t know if the extra pain is from sitting in the car or walking around, but my toes have been really bad and consequently it feels like my left calf has a permanent Charlie horse. Also, for the first time, I’ve developed hip pain – it feels like there is a knife stabbing into my left hip joint at all times. So, while I’ve really enjoyed being in California, I think I’ll be ready to get back to Boulder tomorrow so hopefully I can go in to my rheumatologist’s office on Thursday and they can show me how to stab myself in the leg with a needle. And hopefully that will make it all hurt a little less. Hopefully.

Friday, May 15, 2009

Happily Ever After in Alabama

Last weekend I was lucky enough to be invited to attend what can only be described as a fairytale wedding. The bride and groom were both friends from college, which also gave me the opportunity to see some other college friends. And, since the wedding took place in a small town in Alabama, it was also quite the cultural experience!

APL and I flew into Nashville on Friday, where we met up with my friend DS at the airport. DS is such a true New Yorker (grew up on Staten Island and now lives in Manhattan) that she never even bothered to get her driver’s license. Thus, she had to use her passport to get to Tennessee, which I thought was pretty hilarious and appropriate. Since it had been four years since I last saw DS, I was surprised (and yet somehow not surprised) that we slipped right back into friendship as if no time had passed at all. Getting to reconnect with DS was one of the very best parts of the whole weekend. Now I’m just hoping that we can see each other again before four more years pass!

Though I tried my hardest, the weekend was basically a gluten-free FAIL. For example, when we left the airport in Tennessee we stopped at a Cracker Barrel to get something to eat before driving to Alabama. I spent a full five minutes talking to the waiter about whether or not there was any wheat in their salad dressings. I told him that I had a wheat allergy, which is usually easier to explain than “gluten-free.” He finally suggested oil and vinegar, which I said sounded great. He then proceeded to serve me my salad with a mountain of wheat-full croutons. Instead of being picky and sending the salad back, I let DS and APL eat the croutons. Then I poured the oil and vinegar on my salad and began to eat only to discover that he had given me malt vinegar, which (a) is made from barely and thus not gluten-free and also (b) totally disgusting on salad.

The wedding itself was completely crazy. Due to large families and lots of friends, the wedding party consisted of the bride, the groom, eleven bridesmaids, eleven groomsmen, two ushers, four hostesses, four flower girls, one ring bearer and one honorary ring bearer (who wasn’t old enough to walk yet). That’s 36 people in the wedding party alone!!

The reception was held at the country club (obviously!) overlooking the Tennessee River. Despite horrific rain early Saturday morning the sun seemed to come out just in time for the wedding party to take gorgeous pictures on the perfectly manicured lawn. There was champagne, martinis, and wine; crab and shrimp cocktail; and a gorgeous wedding cake (which I did not eat, due to gluten, but it looked beautiful!). And despite having a million guests to greet, we actually got to hug the bride and groom and take some pictures with them. (Ok, to be fair, DS and I totally ambushed the bride with hugs, so she didn’t actually have much choice in the matter!) The evening ended with a fantastic fireworks show and the bride and groom running out to their limo through an alley of friends and family holding sparklers. You couldn’t ask for a more fairytale wedding! I’m really glad I got to be there.

But, because this blog is all about honestly, I find myself wanting to admit that while the wedding seemed to go perfectly, it really wasn’t very easy for me to be there because I didn’t feel very well at all. After the flight and the two-hour drive to Alabama and some sleeping pills, I still didn’t sleep very well on Friday night. I woke Saturday morning to a bloodstained pillowcase, despite my attempts at wearing a Hello Kitty band-aid to bed. The sore on my lip is still there, even though it has been more than three weeks, and it’s sort of hard to feel pretty with a bloody scab in the middle of your face. I also had a lot of pain to contend with that day. My whole body hurt from sitting on the wooden pews in the church, even though the service was relatively short. I had to wear ugly sandals to the reception because my feet just couldn’t handle the cute ones (even though they were just plain flats). My wrist locked up from holding the hors'dourves plate for only a few minutes, which was really painful, and by the end of the evening my fingers were so tired from holding things that I kept spilling my drink.

Also, aside from the physical pain, it was sort of hard for me to be there emotionally. I find that I don’t quite know how to explain this feeling without sounding completely selfish, so please bear with me while I try.

There is so much happiness going on right now in the lives of my family and friends. The bride’s happiness was so overpowering that she was absolutely glowing with it and it even made me cry a little when I finally got to hug her. And on the exact same day as this wedding, my little brother graduated from culinary school and got his tall chef hat, my very good friend RK (as well as all the people I was a 1L with) graduated from law school, and my cousin graduated from college. Another friend just got accepted to the graduate program of her dreams and a friend from high school just had a baby. Yet another friend is starting her dream job at the end of the summer and still another is getting married in July. I am sincerely happy for all of these amazing milestones that are filling the lives of my friends and families with joy.

However, when I think about all of these wonderful things in the lives of the people I love, I can’t help feeling just a little but sad about it. I don’t feel like “jealousy” is the right word, because I feel like when you are “jealous” of someone you want to detract from his or her happiness because of your own unhappiness. But that isn’t what I want at all. I want all of my friends and family members to be as happy as possible, and if there are ways that I can add to their happiness – like going to their wedding – then I certainly want to do that. But I still can’t help feeling at least a twinge of self-pity about the state of my own life over the past year and the fact that the last big milestone in my life was my RA diagnosis.

But I know that I am still going forward and that if I just keep positive I will eventually get back to the big and happy milestones of life. In the meantime, I have learned to celebrate much smaller milestones, like an enormous breakfast with an old friend at the Waffle House or hearing that PN and AN spoiled my puppy rotten while we were away. And I know that I’m really lucky to have friends and family with such happiness in their own lives to help get me through the rough patches in mine. Because these sure are some rough patches.

Thursday, May 7, 2009

Hello, Kitty!

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

Wednesday, May 6, 2009


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

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

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

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

This sucks.

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

Monday, May 4, 2009

Just Me (And No IV)

For the last week I have been dealing with a lot more pain than usual, and it has been getting increasingly worse. First just my toes hurt a little bit more; then my fingers. Now my everything hurts. My toes, my ankles, my shins, my knees, my wrists, my fingers, my elbows, my head, my lip, my EVERYTHING! Granted some of those things aren’t directly related to my RA, but it seems like a lot of them are.

I thought maybe it was just a “flare” and I waited about a week for the pain to go away, but it only seems to be getting worse. I started to get worried about the upcoming weekend where APL and I will be traveling to Alabama to go to a dear friend’s wedding. Obviously I would love to be able to dance at her wedding, but because of all the pain I am in I was starting to worry about making it through the airport on my feet or staying energetic enough to last through the whole reception. I really want to enjoy her happiness with her, but with all the pain I’ve been in lately I found myself willing to trade dancing for just staying upright, which doesn’t really seem like any nice way to live.

On Saturday night I felt particularly discouraged, so Austin and I decided to go out to dinner to see if we could get me to cheer up and snap out of it. We were sitting at a local Mexican restaurant, sipping margaritas while we waited for our table, and talking about how I shouldn’t feel bad that I am constantly calling the rheumatologist with my different problems. I was frustrated because it seems like as soon as I get one piece of my body under control (i.e. my shoulder, my rash) another piece goes out of whack (i.e. my EVERYTHING, see above). But, even if my body is a complete disaster, I guess it is the rheumatologist’s job to help me deal with my disaster. So we resolved that I would call him first thing on Monday morning.

It was then that I looked up to see an adorable little girl smiling over her daddy’s shoulder at me. Being me, I obviously started making faces at her to make her smile. She started giggling and her dad turned around to see what was going on. And who could it be? My rheumatologist! He asked me how I was feeling and I told him honestly not well, but he was out to dinner with his wife and daughter so I didn’t want to bug him. I told him I would call him on Monday and he was really supportive and said we would figure out how to deal with it and make me feel better.

The really great thing was that he remembered and called me first thing this morning to check to see if I was ok. We ended up playing phone tag most of the day but I did eventually get a chance to talk to him. We decided that it was time for a change, and that change means no more Remicade. I had my first Remicade treatment last October, so we’ve been trying that treatment for about seven months now and obviously it isn’t solving all of my problems since currently my everything hurts (again, see above.) So, instead of what would have been my sixth infusion of Remicade next Wednesday, I’ll be meeting with the rheumatologist to discuss my options for the next treatment we will try.

In some ways, giving up on the Remicade is sort of like going back to square one. Although I guess it’s really like square two since we can at least mark something off the list. Also, since the Remicade did seem to give me some improvement in energy and decrease in pain (at least for a few weeks after each infusion) apparently there are some other treatments in the same category that we can try that I might possibly get more benefit from. Of course, I might not get more benefit from them – I might even get less. Only time will tell. And apparently some of those treatments are “self-injectible” which I am not particularly thrilled about. Although I did get a good laugh when the rheumatologist suggested that maybe APL could do the injections for me – you never saw such a big man pass out at the sight of a needle as my APL!

In the meantime I’ve been put on a high dose of prednisone so that hopefully I can make it through the weekend in one piece and maybe even enjoy myself (I would cross my fingers about that only I can’t because it would hurt too much…) And, by next week, my rheumatologist and I should have figured out what Plan B is. Wish me luck on both fronts, please!

Friday, May 1, 2009

Unwanted Anniversary

One year ago, I was finishing my second year of law school. While I was trying to prepare for finals, I noticed some pain in my left foot. I had been so busy all semester that when I tried to think about when the pain had started, I found I couldn’t actually remember. I did, however, remember having once dropped a flag stand on that foot. Maybe the toes had been broken and healed funny, I reasoned. Maybe that was why my foot was hurting so much. As I continued to try to study and write my outlines, I also found that I was feeling really tired. But what law student isn’t tired during finals? I just tried to ignore it all.

But eventually the pain in my foot became distracting and my exhaustion was limiting my ability to study, so I gave in and went to the doctor. As for my foot, the doctor did some x-rays and sent me to a podiatrist, but neither could figure out why my foot hurt so much. So I settled for taking some Aleve and ignoring it. As for my exhaustion, some bloodwork showed that I was severely anemic. That was what was causing the exhaustion, they told me. Take these iron supplements and you will be fine.

So, about a year ago, I followed their advice and finished finals. As I was taking my exams my fingers started to hurt. But I just assumed it was from overuse, as I was spending hours and hours in front of my computer preparing outlines, writing papers, and typing exams. The finger pain would go away when the semester ended, I reasoned. It never occurred to me that all these problems could be related.

After school ended, I went to Portland for my little sister’s college graduation. I found that the traveling really exhausted me. One morning I even got sick right into my napkin at the breakfast table. I assumed it was the exhaustion from finals and from being anemic. I figured if I kept taking my iron supplements I would be feeling better soon.

After I came back from Portland, APL, RK, and some other friends and I took a big group camping trip to Great Sand Dunes National Park. It is absolutely one of our favorite places to go in the summer – like the beach at 8,000 feet. There are enormous sand dunes snuggled right up against the Rockies, and a river flows by the front of them, mostly underground, making it shallow enough to wade in. It also happens to be River’s most happiest place on earth – sand, water, running, playing – she thinks life can’t get any better than that! We spent the weekend with our friends climbing the sand dunes, drinking beer, cooking over campfires, and wading through the river. It was a lot of fun but I found myself exhausted and headachy through the whole thing. I blamed the anemia and the stress of the end of the school year and maybe the altitude. While my friends climbed to the top of sand dunes, I settled for laying on a blanket in the shade.

At the end of May I went on a canoe trip with my dad, my sister, and some other members of my family. It was a gorgeous trip on the Green River in Utah, which flows through some of the most interesting and beautiful canyons you’ve ever seen. Though it was weeks after school had ended, I was still feeling really exhausted. I continued to blame the anemia, though I had been taking large quantities of iron supplements for weeks. Although I have always been quite athletic and I’ve always enjoyed canoeing, while we paddled down the Green River for five days it made my everything hurt. I could barely grasp my fingers around the paddles, my shoulders were burning, and even my toes and knees hurt. I chalked it up to not having done much with those muscles in a while. Besides, everyone else on the trip was sore too – canoeing can be a lot of work. I wasn’t more sore than anyone else, I told myself.

Shortly after the canoe trip, I drove from Colorado to Los Angeles, California, where I grew up, to spend some time with my family. I stayed at my mom’s house, determined to catch up on sleep and kill my exhausted feeling once and for all. My mom made us lovely dinners and we did a lot of relaxing together. But as hard as I tried to ignore it, I wasn’t getting better – I was getting worse. My knees swelled up to the size of grapefruits and hurt so much it was difficult for me to walk.

As soon as I got back to Colorado I went straight to the doctor. With all the symptoms beginning to add up, the doctors ran a lot of tests on me and I was given my diagnosis of rheumatoid arthritis last June.

I’m only 26 years old, but to be perfectly honest, a very large percentage of the last year of my life has sucked. A LOT. I’ve been exhausted and my ability to travel is much changed. I’ve been so exhausted that I felt like I needed to invent a new word to explain it: cryierd. Though I finished a semester of law school with RA, I had a great deal of trouble focusing and a lot of trouble sleeping. The stress and exhaustion led to anxiety dreams, lots and lots of anxiety dreams.

My hands have hurt and stopped me from sewing and using chopsticks. My feet have hurt over and over again, which has kept me from doing things I wanted to do like snowboarding and going to the Obama rally in Denver before he was elected President.

I’ve had shoulder pain and jaw pain and headaches and colds and cold sores that wouldn’t heal and rashes that have gotten infected and required cutting, draining, and my first-ever stitches. I’ve spent hours fighting with student health and dealing with insurance paperwork. I’ve been sad, I’ve been grouchy, and I’ve even been depressed.

But even with all of that I hope that most of the time I am able to maintain a good attitude. Just having a diagnosis at all is really good news, because it allows us to try to figure out how to fix the problem. And I know that I have to be patient because the process of trial and error is a slow one. Despite all the horrible stuff that has happened this year, there has also been some good stuff. For example, despite the pain and trouble my knees were initially giving me last May, making it hard to even walk, I haven’t had any trouble with my knees since I first went on RA medication.

I have my bad days but I also have my good days. I’ve managed to go hiking, swimming a few times, bike riding, even running. I’ve discovered the fun of a gluten-free lifestyle and the joy of helping others with their gluten-free journey.

I’ve realized just how lucky I am to have my little family of APL and River, especially APL. I’m also lucky to have the support of the rest of my family and my siblings. And I am super lucky to have an amazing friend like RK and all my other friends who have supported me this year.

However, while I really am trying to keep a good attitude about the progress I have made this year, I can’t help feeling like it isn’t quite enough. I know when people ask they really want to hear me say that I'm feeling a lot better, but that isn't exactly true. My feet have been hurting more this week than they have in a while. I’ve still been having trouble sleeping and I’ve been constantly waking up with headaches. I feel exhausted a lot of the time and now I think I have the extra mental feeling of being exhausted of being exhausted.

I do want to thank everyone who has been reading this blog and showing their support. This blog has been really useful for helping me figure myself out, and I really appreciate you taking the time to see how I’m doing. But sometimes I can't help but wonder if I really have come as far as I could have in the past year. I want to be proud of my accomplishments, but I still wish I was feeling a lot better, and sometimes I get pretty discouraged about all this. I mean, if I've only made it to this point in a year, how long will it take until I can say I feel good and happy and healthy again?

I guess only time will tell.