Tag Archives: systemic lupus erythematosus

Bikinis, Battle Scars, & Warm, Woolen Mittens

I’ve been writing this post in my head for months – since January! Somehow it never got written, and then new things kept happening that I thought should be included…  and suddenly it was November. Tomorrow is Thanksgiving, so I am determined to finally get this post written and online. I can’t think of a more appropriate time to post it.

Living with a chronic illness often means that we are forever bemoaning the loss of yet another person who has jumped ship from our lives. While this sentiment is often justified, I sometimes feel as if I spend so much time focusing on those moments that I forget to truly appreciate the friends that have stuck around and understand what my life is like. Sometimes this understanding is blatantly obvious in the form of gifts and such, but other times it can only be found by reading between the lines.

I don’t really send my blog link out to people that I actually know in real life very often. I pour so many honest, personal feelings into my posts that everyone knowing them would just feel awkward and like a violation of my privacy. Of course, that means that people only know what I’ve actually told them, and I’ll be the first to admit that it isn’t always very much. Still, sometimes I get off-hand comments from people I’m not close to anymore telling me that they saw something on my blog. That always shocks me, because I sent them the link such a long time ago, and we’ve drifted so far since then, that I didn’t even realize they still look at it. Likewise, I have an old friend that I barely even keep in touch with beyond a big group dinner or drinks when she’s in town for Thanksgiving. Yet a couple of years ago, she told me that when she heard about the lupus she spent a lot of time learning about it online. She’s nowhere near the only person that told me she looked into it, but she was the one that shocked me the most because I’d never talked to her about it even once.

Way back last January, I met up with a close friend for dinner. She made a comment that stuck with me. She told me that when she, and our third friend, say, “How are you?” That means that I can gripe about my illness, or I can just say that I’m fine. Or I can ignore it altogether and just talk about work or the weather, and all of those options are perfectly ok. Those three words are so disarmingly simple. Just “How are you?” We say them all the time, sometimes even to strangers. But we don’t always mean them. They’ve become an extension of the standard “hello” greeting. Or, even when we do mean them, sometimes we don’t really want all the details. Over the years, I’ve learned which friends need me to skip over the illness-related realities, because I can see that they’re visually uncomfortable.

The funny thing is, those sorts of statements and questions are so generic that it’s easy to miss the depth of their meaning. It’s not so much what the words are as what they represent. I love when I get texts from a friend saying things like, “Thinking of you in this turn of cold weather.. Hope you’re doing alright.” It’s comforting to know that the sender cares and is aware of how my body reacts to this kind of weather…. but she doesn’t require a definite response. I don’t have to muster up the right way to say, “I’m holding up ok.” or “Yeah, it really sucks.” At the same time, now I can do so if I need to, without feeling as if I’m mucking up someone’s day with whiny texts.

The weight gain caused by my medications was something that I really struggled with. Losing the weight was a huge struggle too. Now, even though I’m more or less satisfied with my weight, I’m still self-conscious about the stretch marks that all the weight changes left behind. Honestly, last summer was the first time I’d worn a swimsuit, let alone a bikini. I was a little uncomfortable with it, but I knew that I was safe with my friends. I still made an awkward off-hand comment about the fact that I try to think of them as something along the lines of battle scars. They didn’t bat an eye. All I got were grins, chuckles, and a new conversation topic. And, frankly, I doubt that they even remembered the comment, but their reaction was so natural that I stopped feeling awkward about all the marks.

When another close friend of mine went on vacation to Machu Picchu, she came back with gifts for some of her friends. She’d chosen unique gifts for each person, based on what she thought they’d like best. She handed me a pair of thick woolen mittens, commenting that she remembered how much I’d struggled with the truly brutal winter we suffered through last year. Sometimes I think maybe people just sort of space out when I start talking about things like how brutal winter weather is for me… and sometimes they really do. I see their eyes glaze over. It’s times like that one, though, that I feel like I’m about to cry. In a good way (yes, boys, there IS a good way), because those moments remind me that there are people who are paying attention and who actually remember and care about what I said.

The other day a friend commented that I didn’t really have anyone to talk to when I was going through the whole diagnosis process. She meant that I didn’t have anyone who’d actually been diagnosed with lupus to talk to, but my response was, “Well, but I had you.” and I meant it. There is something to be said for talking with someone who’s actually been through this stuff, but it’s also easy to underestimate the importance of the continued support of the people that have always been there for you. You expect that those people will be around for you, so you aren’t shocked except if they suddenly aren’t anymore.

It’s hard to tell whether these people realize how much these little things mean to me. Sometimes it’s hard to articulate, because I’m not sure that there are really words for those feelings of love, and belonging, and reassurance (yet those words just don’t seem to encompass the feelings completely either.) I would say that “friendship,” is supposed to encompass all of those feelings, but that just seems cheesy. So I will just say this: to those of you I mentioned in this post, and to the rest of you who are equally important (but I had to stop myself before I wrote an entire book,) this is me saying that I’m thankful. I’m thankful, and I’m very, very grateful even if I don’t always manage to say so. I couldn’t have dreamed up better friends had I tried.

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The Stomach Who Can’t Be Moved

It seems my body is less than satisfied with one diagnosis. Lupus wasn’t enough so it developed fibromyalgia. When that wasn’t enough it developed gastroparesis.

Simply put, having gastroparesis means that my stomach muscle doesn’t contract properly and I end up with food stuck in my stomach for hours at a time. Often, this means that I just throw it back up because my body gets confused. I have issues with acid reflux because the food and acid get stuck there. It also means I’m never hungry and am almost constantly nauseous.

It took me almost six months to get an appointment with a gastroenterologist/GI doctor. He did an endoscopy. Noted a large amount of acid erosion and put me on a prescription antacid, omeprazole, to reduce the acid in my stomach and help the erosion heal. Mercifully, he also gave me an anti-nausea med, Zofran (ondansetron), which helps a ton.

I wasn’t satisfied with this doctor so I found a new one. Of course, it took another six months to get that appointment. She was awesome. She ordered a gastric emptying study. They had me eat a plateful of eggs with a contrast in them and then take a number of x-rays over a few hours to see how the food moves through. Inexplicably, the study came back normal. The doctor was flabbergasted, but continued to treat me as if I have gastroparesis, which is evident from the symptoms.  She gave me reglan (metoclopramide), but only to use as needed. She doesn’t want me taking it all the time because it has some nasty side effects.

Over the last year I have found some things that help me manage the gastroparesis other than the med. I don’t eat raw salads anymore, because those can’t be digested well with my stomach the way it is. I don’t eat high fat meals, and I don’t eat big meals anymore. (Thanksgiving is fairly ruined.) Together, these changes help minimize the number of meals that I end up throwing up.

However, I know a lot of people with other chronic illnesses seem to develop gastroparesis. Whether this is due to the illnesses or the meds that we take for them is beyond me. All the same, I’d love any advice on  what else seems to work.

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Filed under advice/suggestions, coping, medical update

Work Series: Business Trips

Last week I was sent on a 2 day business trip. Trips can be a difficult proposition for people with lupus and other chronic diseases. Travel is exhausting, and getting somewhere often requires exposure to all kinds of nasty germs. Then there’s the trip itself. When I travel for fun I try to plan enough rest breaks, etc. I don’t have that option on a business trip. The agenda is already set – and you can’t go skipping things because you’re tired. By the end of the trip, here are the top 10 things that I had learned:

  1. Don’t forget a mask for the airport and airplane. People might avoid you because they think you’re sick – but at least then you can’t catch whatever they’re carrying. So avoiding you is actually in your favor. Getting sick is no good – especially when you have meetings all day! (Of course, this applies to all air travel.)
  2. Pack your heating pad. Long hours sitting on an airplane and in meetings plus exhaustion left me really achey and stiff. Having a heating pad to use at the end of the day made me feel a lot better. It made the next day of meetings so much easier!
  3. Don’t forget your daily meds. I like med cases with the days that can be popped out so I can take just the relevant days. Small Tupperware containers or even snack size zip-locks also work in a pinch, but don’t forget to label the day and time of day.
  4. Don’t forget your PRN meds. I forgot my painkillers and anti-nausea meds! This was very, very, very bad.
  5. Streamline your work bag. You’re going to be carrying it around all day at the conference, so make sure it only has the few things you absolutely need. Your shoulder will thank you.
  6. Pack comfortable shoes. I mean the most comfortable but still work appropriate shoes you can find. You will be on your feet, and your poor feet won’t want to be in uncomfortable shoes all day – no matter how comfortable they are.
  7. and #6 also applies to comfortable clothes.
  8. If you wear makeup, concealer and blush are a must. I looked all washed out, and I woke up with dark circles even in a fancy hotel with nice beds. The concealer also helped cover up the lupus rash I get on my face when I’m too tired.
  9. I’m not generally a big fan of hand sanitizers since they can promote bacterial resistance and all, but in this case I wished I had kept a bottle in my bag. At work conferences you end up shaking a lot of hands. This is great for networking. It’s not so great for preventing infections.
  10. Practice your acting skills. I’m all for educating people about my illnesses, but a work conference just isn’t the place for that, in my opinion. This is something that I do every day at work, but at a conference there wasn’t any lag time when I could relax out of that role. This meant I needed to keep a smile on my face all day long and fake good health. As frustrating (and exhausting!) as it is to do this, I want my work relationships to be based on my work not on my illnesses.
  11. EDIT: One more amazing suggestion courtesy of @forgetful_girl: “One thing that I would recommend is packing handwipes/antibacterial wipes. When I go on a plane, I wipe down everything- handrests, remotes, trays. I also do the same when staying at a hotel, making sure to wipe over the remote.”

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A New Job, A Fresh Start

This post was included in the Patients for a Moment: Starting Fresh blog carnival hosted at chronicbabe.com.

A couple of months ago I started a new job. My Twitter friends were probably sick to death of hearing me talk about job applications – it took an entire year and a half to get one. I did find a good job finally and I’m happy about that, but it’s also hard to let go of the career I was SUPPOSED to have. Since high school, I worked towards a medical career. I took the advanced science classes – and  sacrificed sleep to pass them. I put in the hours of lab research and community service. I shadowed doctors at ridiculously early hours of the morning. I even got in to a great medical school program and started attending classes. Then the lupus reared its ugly head and all of a sudden that dream was just gone. There was no way the crazy hours and high stress levels were going to get along with my lupus, so I was forced to leave the medical program. I think I’m still mourning that loss.  I see my new job as a poor substitute for the life I wanted, and that just isn’t a great way to face the world. It certainly doesn’t help that my new job is in clinical research – a field that I was trying to run far away from because I knew it wasn’t where I wanted to be. It’s definitely not something I want to do full time for the rest of my life.

It’s so frustrating when people say things like “Oh well, that’s ok, you can just find another career.” Well, sure, I can find another career, but it won’t be the career I wanted. The one that I dreamed about and spent 10 years working towards. That one was taken away from me by factors beyond my control. I know people mean well, but those comments just aren’t helpful. And then there are comments that I get from other members of the chronic disease community. Things like “Why can’t you just be grateful that you can even manage to work fulltime. I’m never going to be able to do that again. I wish I could work somewhere – anywhere.” I get where they’re coming from. The loss of life goals and feeling like we’re stuck on the fringes of society outside the circles of “respectable” citizens that do their part is a very difficult part of the chronic disease reality. I certainly don’t mean to undermine their feelings when I complain about my job situation, but I also shouldn’t have to hide my feelings from my friends. Everyone’s life is affected differently by these diseases, even if the overarching themes are the same.

It probably isn’t great for my mental health to see my life in this pessimistic light all the time. So I think my new goal is going to be to remember that just because this is where I’m working now doesn’t mean that this is where I need to end up. I’m not stuck here and it’s time to stop being so  bitter about what I’ve lost and start thinking about what I can still achieve DESPITE the lupus. It sounds so simple in theory, but I think it’s going to be even harder than I can possibly imagine. But all I can do is to try to keep steering myself towards the attitude that I want not the one that comes so easily right now. I may have started my job a couple of months ago, but I think the true fresh start is happening now.

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Filed under blog carnivals/grand rounds, coping, insensitivity/ignorance, introspection, rant, work series

Loving Pride with a Side of Wistfulness and a Dollop of Frustration

Last night I attended a law school graduation ceremony. Not just any law school graduation – one of my very closest friend’s graduations. She’s been one of my absolute best friends pretty much since the day we met. We were 12. We’re almost 26 now. You can do the math. She’s essentially family. So when she asked me to attend her law school graduation, saying no never really occurred to me. How could I not go if she wanted me there? The fact is, I know how hard she’s worked to get there and I’m incredibly proud of her. Of course I am. How could I not be?

One thing I’ve realized about living with a chronic illness: it invades and taints every last aspect of your life down to your genuine pride in your friends’ accomplishments. As I sat there and listened to the keynote speech about all the things the graduates could achieve, I couldn’t help but think about the fact that my lupus and fibromyalgia took away my own professional degree. There is no longer a med school graduation in my future (despite the fact that I’m still paying loans for the time I was in med school). I wonder if that reality is ever going to stop stinging…

It can be so hard to watch as other people’s lives move forward while mine seems to be stagnant. It isn’t, not really, since I do have a job. But it makes me irritatingly repetitive as I try to emphasize the couple of impressive things about my job because it feels so inadequate compared to what other people in my life are achieving as their lives move forward and I’m stuck in a regressed career time point that I thought I was well beyond. One, in fact, that I specifically didn’t want and pointedly moved away from.

Of course, I didn’t say any of that. I hid it as well as I possibly could. I didn’t want my pain to take away from her big day. That wouldn’t be fair to her. I couldn’t bear the idea of her worrying about my sadness at the loss of my life plans when she should be celebrating the accomplishment of hers. There’s no reason why her mind would drift to the idea that i would be anything but happy for her, after all. And while it is inarguably not fair for me to have to hide my true feelings either, I felt it was the lesser of two evils.

Alas – (Ok so maybe that word choice is a little excessively melodramatic, so sue me.) – this is a problem that never really goes away as the lives of the healthy tick ever forward while we sit around in some, inaptly named as it is rather slowly sinking, quicksand.

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The Time Has Come, the Walrus Said, to Explain What “Mostly” Means

This post is part of the Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. You can learn more about it here:http://info.wegohealth.com/HAWMC2012.

 

Today’s topic:

Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

One of the questions that I get quite a lot since I switched over to this blog address (and title!) is “What is up with the ‘mostly’ in your title??” (Or some variation thereof.) Today’s HAWMC topic opens it up for me to write a post about it, and I think it’s been put off because a lot of people might take offense. So let me just say that I am just being honest and speaking only for myself.

One of the lessons that I’ve learned the hard way is that I need to stop when I suspect that I need to stop.  By that I mean that I often push myself beyond my limits – knowingly. And that is really want I’m talking about. It’s not the accidental overstepping, but the knowingly disregarding my limits.

There are times when I refuse to accept that I can’t do something that I want to do. So I go ahead and do it anyway. So I push myself to keep going even though I’m in a world of pain or I’m practically holding my eyelids open. I know that this is a bad idea.

This is why I say “mostly” blameless. We certainly aren’t to blame for the illnesses that we have, but I do think that I am sometimes to blame for how terrible I feel one day if I really pushed too hard the day before. I’m well aware when I’ve reached my limits, after all. I just don’t always know where that limit is going to be until I hit it.

But this is part of living with a chronic illness. Sometimes you push too hard because you want to attend an event or complete a project or go on a trip. It’s unreasonable to believe, at least in my life, that it’s possible to go through life skipping ALL those things that I want to be a part of. So sometimes I suck it up and go. And I pay for it. But, to me, it’s worth it.

My illness takes a lot from me, but there are some times when I’m just not willing to compromise. On those occasions, it’s my own fault that I’m feeling to downright nasty the next day. It’s a choice I make willingly, and I am the only one to blame for that.

Hmm.. on second thought, perhaps this is a bad example of a lesson learned, since I clearly haven’t quite learned it….

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Filed under blog carnivals/grand rounds, coping, introspection, WEGO Health Activist Writer's Month

“I’m just going to write because I cannot help it.” -Charlotte Brontë

This post is part of the Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. You can learn more about it here:http://info.wegohealth.com/HAWMC2012.

 

Today’s topic:

Writing with Style. What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best?

 

I do sometimes plan my posts, in the sense that something will happen and I’ll think “Oh, hey, this would be an interesting thing to blog about. How could I write about this?” If I don’t have a topic sorted out, then I often won’t write a post until I do. That means that sometimes I don’t post an article about a topic until months later.

Once I’ve got the topic fixed, though, that’s the end of my planning efforts. For the most part, words flow directly from my head to my fingers on my keyboard. I usually go back and make a few edits, but mostly for spelling and punctuation. I almost never change the content or rearrange anything. Sometimes I won’t write a post on a topic until I can figure out a slant that more people will relate to.

I absolutely never handwrite any of my posts before typing them. This is sort of interesting, because people who know me in real life know that I love to send handwritten notes and cards.

Title writing is a constantly varying procedure. Sometimes I’ll think of a title that I like and write a whole post from there. Other times I’ll write an entire post then fail to post it until I come up with a title a few weeks later. If it’s a post for a blog carnival, then I often end up just coming up with something quickly, since the post has a due date. A lot of times, post titles are play on song lyrics, phrases, or various book/play/movie titles or quotes.

I invariably write sitting up in bed. It is definitely where I feel most comfortable and able to write a post that involves opening myself up.

Despite everything that I have written above, a large number of my posts are written in one rapid sitting. Sometimes I just have the urge to write, and I can’t help but write. Those posts get the most reads (according to WordPress’ stats) … maybe that should tell me something! 


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