Tuesday, February 18, 2014

On Living with Lupus.

This is a post I've been throwing around in my head for months, and after a recent chat with my doctor last week, it's one I've been working on for a few days. I find that I often struggle with explaining just what Lupus does to my body. I know that because the people around me don't experience it the way I do, they can't understand the disease and its impact on my body and life. I'm hoping that by writing this, it'll be a little bit of an education, and perhaps help anyone who bothers reading it understand how a chronic illness works.

As many of you know, I was diagnosed with Lupus in November 2012. I went through a series of tests in the months prior to figure out the cause of a slew of crazy things happening with my body, but the real beginning to it took place when I was only 5 or 6. I have very vague memories of being sick when I was in first grade. From the details I remember, I had a crazy virus that the doctors couldn't figure out-huge stomach cramps, fevers, problems with my eyes-I believe they eventually were considering Kawasaki disease, but I didn't have every single on of the symptoms. Whatever the virus was, it left my immune system in shambles and the doctors warned my mom that severe autoimmune diseased might be in my future.

Fast forward to high school when I was diagnosed with a mild case of rheumatoid arthritis. I thought that would be it, but nope.

In the summer of 2012, I started to have some weird issues popping up-unexplained sores in my mouth and down my throat, chunks of hair falling out, weird rashes on my body, difficulty breathing and fluid build-up in my lungs, feeling completely exhausted even after hours and hours of sleep, problems with my eyes (randomly un-focusing and little sores forming under my eyelids), as well as severe amounts of joint pain-and not just in areas impacted by my RA, but everywhere. I knew something was wrong, so my doctor started testing, referred me to a specialist, and after a few months of blood work, etc, I was "diagnosed" with Lupus. My doctor still considers my case to be "mild" and for that I am grateful.

After my diagnosis, we battled with medication. I never wanted to be a person to be on a pill for the rest of my life, but we finally settled on something that seems to work for me. I get bi-weekly injections of a drug called Humira (I'm sure you see ads for it on TV. Embrel is another injection that works for other people). When my joints get really bad, I go in for steroid injections, which my doctors places right into each joint that aches. I've also been put on stronger steroids for various problems over the last year-mainly fluid build-up in my lungs. I've had a series of respiratory infections and bouts of walking pneumonia, so my lungs are week. I carry an inhaler with me all the time and use it daily (the cold weather is especially harsh on my lungs). We've also considered a drug called Methotrexate, which is commonly used in chemo treatments, but we've held off since my case of Lupus isn't as severe as many others'.

In many ways, I'm very lucky. I've been lucky not to have a lot of unpleasant side-effects (yet...symptoms change as the disease progresses), and I have an excellent doctor. He always makes time to see me, even if it isn't something directly Lupus-related. He has also arranged for me to come in for my Humira injections as opposed to me giving them to myself. I'll be honest and say they hurt pretty bad, so I would chicken out on doing it at home. And while I know Matt would give them to me, I'm not ready for that. But my doctor always makes it a point to sit down and talk to me, and not just about the disease. He cares about my whole self, and he's the one who convinced me to write about my life with the disease.

Most days I feel perfectly fine. I can carry on and feel completely normal. Then I have the in-between days where my lungs are hurting more than normal, I can feel the aching in my joints, and I just want to sit. Then, there are the bad days. Now that we have my meds stabilized, those bad days don't come as often. A bad day usually means I can't go in to work. On some bad days, it takes me twenty minutes just to sit up in bed. My hands usually hurt to the point where I can't grasp things (like my phone or a pen to write, let alone buttoning jeans), and my whole body just hurts. On bad days, I just stay in bed and watch TV, hoping the next day will bring relief.

Last year, as I was battling with the disease and getting it under control, I had a lot of bad days. Some were worse than others. Low points included falling down. There was one night where Matt was in the bathroom and I fell trying to walk in to our bedroom. Matt had to help pick me up and get me to bed. There are a lot of humiliating moments like that, but thankfully he's been there to help me.

When I have a slew of bad and not-so-awesome days together, that's a flare. When I'm flaring, there's usually a lot going on with my body. I break out in rashes across my cheeks (it's called the butterfly rash. Some Lupus patients have it permanently-I only get it in flares, and it disappears). My joints are usually swollen and inflamed. Last year I had to take multiple days off because of these flare-ups and bad days. I've been fortunate to not have to do that this year. The times I've felt bad or been flaring have been over breaks, or I toughed it out until the weekend.

As for how people treat me?

This is probably the hardest thing about Lupus. Like I said, on most days, I feel perfectly fine. I look fine. Even on my in-between days I probably look fine. It's only when I'm really hurting that I look bad. As a friend at work says, I get "glassy-eyed." I think that's her kind way of telling me I look like death. What's hard is that on those in-between days, I'm still hurting. And no one quite seems to get what that means, or how painful it is. I try very hard not to whine when I'm not feeling good, but I'm not sure how good of a job I do.

I think that what bothers me most is when people tell me what I should be doing to feel better. The most common thing I hear is go be active and walk around-then I won't be as tired and I'll "get the joints moving!" And while I can understand the sentiment there...no. That doesn't help. When my joints are inflamed and swollen and it hurts to bend them, the last thing I really want to do is go take a walk.

I also hear that my body would probably be better able to fight the disease if I was in better shape. Don't I know it. You can bet I've heard it from my doctor, my mother, my husband, and myself. I know that losing weight would alleviate some extra pressure off of my joints. And I'm trying. But it is hard to exercise in the midst of bad days. I really wish that advice would stop.

One of the hardest things to deal with is my students. I know that some of my kids know that I get sick every so often, and some have ventured to ask why (more so last year), but this isn't something you pop out and say...and is it their business? I battle with that. Sometimes I really want to finish grading their essays, but just can't hold a pen anymore. It would probably be easier to just tell them, but then it's an excuse, right? I don't know. I don't have answers for that.

The other hard topic is having kids. I was flat-out told by my doctor that while not impossible, it will be very difficult for me to conceive and stay pregnant. That's the nature of Lupus. So my only other pet peeve revolves around people asking....I guess I'm at that age. So many friends and family members are starting families and we're still here.

Don't get me wrong. I have faith. I just don't want the questions.

I will say that in the last year I've learned a lot about myself as a person. I think I am more in tune with my body now than when I was in great shape. I know when I'm pushing myself too hard. I know when I've hit my limit of stress and need to step away. I've balanced work and home life so that I'm not putting too much on myself. I know when I've hit my limit and need to stop.

I've also learned that I'm not going to let things get in my way. I have dreams and I'm going for them. When I'm feeling up to it, I write. And while it might not be any good, I'm doing it. And I read the things that move me in the moments I need them. I hug my husband and tell him I love him. I cuddle on the couch with my cats and they comfort me when I'm feeling awful. I teach my kids at school all the things they need to know about history and literature and writing, but also about how to be a good person, how to love and care for each other. At least I hope I do.

And I just try to push through each day in hopes that I make a difference somewhere.

In many ways...I guess I'm grateful for this. It has redefined who I am in a good way and has given me the push I needed to push myself. I think I have become more passionate about the things I love in the last year: Matt, my family, my "kids," writing, education, literacy, my home....Lupus, while a challenge, has also been a blessing.

I hope I explained myself well. Please let me know if you have questions about anything-the disease, my life, my wonderful husband, anything. I'd be happy to answer.


  1. Gah, it sounds so awful, Allie. You already know I experience about 3/4ths of those same symptoms when I eat gluten, but I'm lucky in that I have control - well, mostly, anyway - of my situation, and can avoid all those symptoms unless I'm careless or uninformed. But to have them just pop up randomly, completely out of your control...I can't even imagine. *hugs* Also: I'm sorry people keep trying to give you advice when they really don't understand. I remember the same thing in all the years I was sick from my teeth. There was actually once when Jason's mom sat me down and accused me of pretending to be sick to get attention, and said I needed to grow up and learn to let other people be the center of attention sometimes (particularly because my immune system was so compromised that any time someone in my family got sick, I was sure to catch whatever they had immediately and be sick with it three times as long). People just don't understand! I know I'm far away and really in no shape to help with things like bad flare-ups, but I'm always here to talk or anything you need, k?

  2. I knew hardly anything about Lupus before reading this (apart from that it is painful), so you definitely helped me to understand what having the disease would be like. I'm sorry that you have to deal with all of that.

    I get what you mean about the questions about when you are going to start a family though. I'm currently pregnant, but it took us over a year to conceive (no known issues, although I have bowel disease and that *may* have made it more difficult). We've been married for almost three years, so dealing with all of the questions whilst knowing that we wanted it too but it just wasn't happening, was very difficult.

  3. Thanks for sharing it! I had no idea how bad it is... I'm so sorry for you! You however handle it very bravely, and I totally admire you! I wish you strength and success in everything in your life! Hugs!

  4. I've only recently started following your blog, so you don't know me from a hole in the wall, but I give you a lot of credit for being so honest about what you're going through. Unsolicited "advice" is such a pain in the neck -- I know people mean well, but they don't realize they are doing more harm than good by adding stress & frustration to an already stressful & frustrating situation! I am also at "that age" and constantly get questions about my husband and I having kids and I seriously want to scream at these people sometimes -- it is such a personal, intimate thing and I cannot figure out for the life of me why anyone thinks it's any of their business. There are so many factors that could be influencing that decision, even if a couple isn't having trouble conceiving, but people just don't think before they speak! And if a couple IS having trouble conceiving it's like rubbing salt in a wound! I swear someone should write a book called "Well-Intentioned Things You Should Never Say To Anyone, Ever...Because They're Actually Rude" book and make it required reading for everyone!

  5. You're strong, and an inspiration, Allie. ♥

  6. One of my colleagues (and friend) at work has Lupus, so I knew a bit going in. I'm glad you found a medication that is helping.

    On a side note, the comments from people about getting "healthier" aka "thinner" and the comments about having kids are completely inappropriate. For more on the "thinner" issue, I recommend visiting: http://gribbskiguide.blogspot.com. They have some great posts on the non-relationship between health and weight.

  7. I can't imagine how frustrating this last year has been. You have been so strong and I know you have a long road ahead of you. I'm so glad you have such a great support system with Matt and family. Your blogging buddies are here if you need us!

  8. This sounds so difficult to live with... All I can say is thanks so much for having the courage to post about it, and I hope reading great books can help you a little (even if ever so slightly, or just to help you relax). Lucy over at Tolstoy Therapy.

  9. Sending you all the hugs and love Allie. Thank you so much for sharing this post. I didn't know anything about Lupus before I started getting to know you. I think it's amazing how encouraging your doctor is. I love that he encouraged you to write about this. I also know how hard you have worked to find that right balance in your life, so I'm so proud of you for doing what makes you happy and healthy. Not every day is easy or perfect, but it sounds like you are doing the right thing for you, your body, and your family. I'm sorry that people don't understand, but I hope that posts like this will open people's eyes. I'm so sorry that you have to deal with all of this, but thank you for being brave and sharing your story.