Category Archives: advice/suggestions

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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Filed under "...said WHAT?", advice/suggestions, coping, shout outs & thank you's

Return to Sender: A Letter to My Pre-Illness Self

This post is part of a Patients For A Moment blog carnival that Duncan is hosting. This month’s PFAM blog carnival topic is “Write a letter to your pre-illness, pre-diagnosis self.
I was supposed to write a (short) letter to pre-illness me. This was harder than it sounds, because it was hard to know what to focus on. Details? General wisdom? In the end, I went with generals because I couldn’t figure out which details to focus on.
Dear Pre-Illness Me,
I hate to break it to you, but there’s no good way to do this other than to rip off the bandaid. Something very wicked your way comes. Soon. Ok so that sounds like something of an epic, species-threatening scope. It isn’t, relax. But it is absolutely of a life-shattering, personal reality-discombobulating scope. Right now, you have no conception of the realities of chronic illness, and there are some things that I wish we’d (I’d? You’d? This is so confusing…) figured out before it happened.
Live your dreams, but think of some backup dreams just in case. Fight for your dreams, by all means. But remember that some things in life can’t be found no matter how much you fight for them. Sometimes it’s necessary to have back up dreams. Welcome to the real world, I hate to be the one to usher you in.
Stop taking your friends and family for granted. It’s so easy to get caught up in your own life, but remember that you give what you get in life. Someday soon you’ll realize how important those friends are to you. And at that point it will be so much harder to be able to hang out as much as you’d like. Don’t let the people who are important to you drift so far away that they don’t want to fight for that friendship even when you do. Friends are important, but you won’t truly understand how important they are until the world starts to crash down around you. On the flip side of that: stop wasting your time with the people you can’t rely on. If you can’t rely on them when life is peachy, you won’t be able to rely on them when things turn rotten.
Learn to choose your battles. You have to be able to shrug off the minor grievances. Your strength will be limited. This means you can’t waste the strength that you have on things that don’t really matter in the long run. That coupon you forgot to use? That paper-cut on your finger? Yeah, not worth all that whining…
Don’t take your free time for granted. You won’t be able to have as much free time pretty soon because you’re going to require a lot more rest. Moreover, what you can actually do with that free time will be even more restricted by the realities of chronic pain, arthralgias, myalgias and the need to stay out of the sun. So get out there on the lake or hike up that mountain, that chance may never come back around.
Learn to truly appreciate the little things. These are the things that matter, but they’re easy to forget about in a world filled with constant new thrills and adventures. That afternoon you could spend reading with a cup of tea? Lovely. That time you were able to have a three hour chat a coffee shop with a close friend? Wonderful. That family dinner you managed to cook and eat without fighting with your sister? Near miraculous. These are the things that matter. It’s easy to forget about these little things when the bigger picture has fallen apart.
Just remember – the people that matter, and the things that truly matter, are still there. It’s easy to lose sight of them, but they still exist. When things fall apart, it’s easy to fall into a despair, but those little things that truly made life meaningful are still there. You just have to remember to appreciate them.
Love,
Future You
The thing is, though, that I can only try to remember what I really thought and felt back then. What I think I remember of myself is tainted by hindsight. Who I’m trying to write a letter to and who I really was back then are two different people. So my letter keeps coming back, marked with words that Elvis immortalized: Return to Sender, Address Unknown.

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Filed under advice/suggestions, blog carnivals/grand rounds, coping, introspection

Book Review: How to Be a Friend to a Friend Who’s Sick

This post is part of a Patients For A Moment blog carnival that Duncan is hosting. This month’s PFAM blog carnival topic is “What is your favorite book about illness?

(Note: Those of you who interact with me via twitter, etc know that I read voraciously. This means that my favorite book about illness today may not be my favorite book about illness tomorrow. I’m going to try to post book reviews from time to time of books that I have loved or not loved and why. However, for the sake of this blog carnival topic, I decided to pick up a book that was recommended to me, but I hadn’t read yet. As such, it isn’t my favorite, but I thought it was worth writing up a post about. I’m excited to see what other bloggers chose as their favorite books. I think my to-read list is going to be growing considerably in a few days…)

3.5 stars

The book How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin was recommend to me by my therapist when we were discussing how hard it is sometimes for me to be a good friend and equally to deal with unsupportive friends/family. Pogrebin started thinking about this topic when she was fighting breast cancer and noticed the varied reactions of her friends and family. The book is actually a collection of short stories from people with varied experiences intermixed with Pogrebin’s own story. What I liked about the book was that she included the reactions to friends’ behavior as well. There are Dos and Don’ts lists and varied suggestions for how to rephrase common questions that are inadvertently offensive or difficult to answer. I chuckled over her commentary and lists of commonly heard comments and questions, many of which I’ve heard myself. A lot of this advice feels obvious, but it’s easy to forget in the stress of seeing a loved one fighting what they’re fighting. Moreover, I think different people will get different things from this book based on what their experiences have been so far and what sort of guidance they are looking for. It did seem a bit long, but I think that’s partially because it’s clearly geared to be helpful even to people who have never had an ill family/friend before.

I think the trick to reading this book (for both patients as well as friends/family) is to try to keep an open mind, remember that everyone’s needs are different, and not to get too offended when you disagree with something that Pogrebin or one of interviewees opined. The book is theoretically aimed at the friends/family of patients, but I think patients can get a lot of out of this book as well. One of the things that made this book feel more appealing for me was the inclusion of incidents in which Pogrebin felt she had failed her friends/family in terms of offering support. And, in truth, even a person fighting a chronic illness can be inadvertently unsupportive of someone else fighting the same illness, because the two people have completely different needs from their friends. There is no one size fits all answer to the “How do I be supportive?” question, and this book drives that home.

As a patient, it’s nice to hear stories that show me that I’m not the only one that has struggled with incidents where friends/family that I rely on were unsupportive. However, reading through these stories was also a great reminder that people generally don’t intend to be unsupportive. They want to help, but they don’t know how to help ME. I emphasize that because one thing that struck me as I read this book was that with so many people fighting so many varied illnesses, especially when combined with how much each person’s needs vary from the next, it’s entirely possible that friends/family are doing what they were told was helpful and supportive for someone else. If you’re told that it was helpful once, it stands to reason that you would offer the same help/advice again. From a patient’s point of view, one of the best things that I got out of this book was a reminder that I need to be clear about what I need from people. It isn’t fair to always assume that they’ll be able to guess, especially if what I’m going through is totally beyond the context of their own experiences or that of their other close friends/family. Reading what worked for other people gave me some new ideas of how to direct my friends/family towards what is actually helpful, hopefully without making them feel hurt or offended, because I know deep down that they’re only trying to help.

For friends/family looking for ideas on how to be supportive, this is a really good place to start. Reading different people’s experiences might provide a more detailed and diverse view of what a patient is feeling in these circumstances. This book may also provide some guidance of what is commonly found to be offensive. Of course, what one patient in the book found helpful might be totally offensive to your own loved one. However, the book can only provide a limited amount of guidance here. This is what I would suggest: I think that the lists of Dos and Don’ts are a good place to start. Pogrebin also included helpful re-phrasings of common questions/comments. For example, “What are you feeling right now?” instead of “How are you feeling?” or “I can only try to imagine what you’re going through.” instead of “I know just how you feel.” These are a good start, but at the end of the day I think that most people would be open to your sitting down and saying “Hey, I can’t begin to understand what you’re going through, but I really want to be supportive. Here are the things I’ve read, but I don’t know whether they apply. What would be helpful for you?” Remember, though, that if you ask and then don’t follow through, that person is going to be even more confused. The fact is, if you’re reading blogs and books to find out what you can do to be helpful, then you’ve already realized that you don’t have the information that you need. Blogs and books like this one can get you part of the way there, but you need to be able to customize that information to your loved on. There’s only one person who can tell you what you truly need to know, and just sitting down and having an open conversation shows how much you care and makes it possible for both of you to be happy in your friendship.

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Dating and the Chronic Life

 

Chronic diseases affect just about every aspect of a person’s life, but which aspects are most painfully affected varies from person to person. Many people struggle with maintaining friendships and feeling like an active, contributing member of society. I have been very lucky in those two areas lately, but I find that the dating and romantic relationships prove to be the hardest part for me to deal with. Dating can be a pretty difficult process to begin with sometimes, but chronic illness just adds another level of messiness.

 

With both full-time work and part-time school, the amount of time that I can potentially spend with someone is already limited. This is then compounded by the fact that trying to manage my schedule with my illnesses means that by the weekend I really just want to collapse into bed and stay there. I’m exhausted and pretty much useless company by Friday night. … and that’s just on the regular days. The problem is, I can never predict which days will be regular days and which days will be “OMG I’m so exhausted I can’t see straight” or “OMG I’m in so much pain that the idea of even trying to get out of bed is excruciating.” So I could potentially plan a date that fits into my ridiculous schedule…. and then wake up that day and say “yeah…no.” Which really sucks, and makes it hard to convince a guy that I’m actually interested. This, of course, applies througout a relationship. I can never truly guarantee that I’ll feel up to doing something. Then there’s the fact that as a vegetarian with gastroparesis, dinner dates are hard. Yes, I can usually find something that’s vegetarian, but I can usually only finish maybe 1/3 of it. It’s uncomfortable sitting a table and picking at my food. It seems like a minor thing, but it makes my dinner dates all the more awkward.

 

Of course, those are only the initial issues. The major elephant hiding under the rug, of course, is the reality of my chronic illnesses themselves. I never really know how or when to let the elephant out of hiding. Trying to hide that something is going on with me is about as easy as trying to hide an elephant under a rug. The big lump under the rug shows in the aforementioned issues with scheduling a date in the first place, it shows when I can barely manage to eat a child-portion meal, it shows when I wince as I try to stand up after sitting at the dinner table for so long, and it definitely shows in my limitations in terms of activities for dates. Hikes? Ummmmm yeah. Not so much. The end result is that people either think I’m not interested, or see the bump under the rug, but can’t figure out what it is. But most of the time they don’t seem to care whether it’s an elephant or maybe a hippo or a rhinoceros? The reality is, most of the guys feel uncomfortable and don’t really want to get into any kind of relationship with someone with this much baggage. Now, granted, a friend reminded me awhile back that most everyone has baggage of some kind. My friend, in her infinite wisdom, said that the trick is finding someone who can accept your baggage and whose baggage you can accept. Well, getting someone to accept it seems to be the issue.

 

I think part of the problem is that I never know when to bring it up. I don’t like to bring it up too early because then I feel like it’s casting a shadow over me and who I really am. I want to at least stand a chance of a guy being interested in ME before I mention my illnesses. On the flip side, if I wait too long I’ve had guys say that they feel cheated and that I should have ‘fessed up earlier. It’s hard to judge the right moment when every guy is obviously different. More than one guy has been put off by my timing, and one even said that he had thought I just wasn’t that into it, but this reality was “way worse.” I once had a guy catch sight of my medical ID bracelet in the middle of asking me out. He faked a page and left without even finishing his sentence. Which just begs the question “Is there truly even a good time?” It’s nice to weed out the guys who don’t want to deal with the realities of my life early, but sometimes I feel like maybe if they got to know me a little first they might be interested in at least giving it a try.

 

Watching my friends move forward with their lives is hard too. One of my best friends got marrried last summer, another one around Christmas, and I’m pretty my sister is headed in that direction in the very near future. Sometimes it’s hard to deal with the dual-ing feelings of joy for their happiness and my own loneliness. Dating isn’t easy even without chronic illnesses, and a lot of my friend are still single right now. This sort of helps, of course. Still, certain times are hard. Valentine’s Day. (Last year my sister bought me a bag of chocolate. Which she later announced – in front of a group of people, mind you – was “pity chocolate” that she bought me because she “felt bad that I was home alone when she was out on a date.” This was supposedly a joke. I don’t think I’ll ever find that kind of cruelty funny, and it certainly didn’t make it any easier.) Summer wedding season is rough too. I try to remind myself that days like Valentine’s Day don’t actually matter in the grand scheme of things. I know this in a logical frame of mind, but sometimes my emotions overrule the logic. This of course leads back to my acceptance theme for this year. Trying to just accept that it’s probably going to be harder to find an accepting guy. Trying to accept that this is only partially in my control. Most of all, I’m struggling with trying to accept that it’s ok for me to feel both overjoyed at someone’s luck and happiness AND miserable about my own love life (cough. lack there-of).

 

Whenever I post something about dating, I invariably get comments or emails from the people who have been lucky in this arena. Generally, when one or both members of a happy couple start to lecture, grating feelings of resentment and annoyance tend to be induced. However, there is some solace in knowing that there are people out there who can be accepting of illnesses like this. Honestly, I get the most reassurance from people who started dating someone after they already had their illnesses. I think this is because, at least to me, asking someone to accept me part and parcel with my illnesses is different from asking someone who is already in a committed relationship with me to accept that I’m being diagnosed with a new illness. I’m sure that that situation has its challenges too, though, and I’d love to hear from people about what they did to get through either of these situations. Have you found any good ways of getting around these issues? Or in explaining your illnesses? How do you judge when the right time to “‘fess up” is? I know that some of this is just a matter of finding the “right guy,” but if anyone has any tips or tricks I’d be grateful…

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PFAM: How do you recharge?

*GASP* A new post! I can’t believe how many months it has been since I posted anything. Sorry I have been MIA lately, I know I need to post an update soon. Life has been throwing too much at me to handle already, and I just haven’t been able to find the time and energy to blog. I’m doing ok, and will post an update as soon as I’m able to. In the meantime, Duncan over at http://duncancross.net/ sent me an email last week asking me to submit a post for this month’s Patients for a Moment blog carnival. This week’s topic is “how do you recharge?”  Thanks for jerking me out of my blog somnolence, Duncan!

 

How do I recharge? That’s a good question, because sometimes it feels like I’m not managing to recharge at all. This question is also awfully broad in scope – are we talking mental or physical recharging? There are some things that I find work for me (sometimes)… not always, not always completely. A lot of my efforts to recharge are grounded in my efforts to let go of my troubles in the first place.

So, here we go, in no particular order:

 

  • Yoga/Meditation.

I try to go to yoga classes at the gym, because I feel like I get more of a relaxation when someone else is leading the class. I don’t have to think about anything that’s going on in my life – just do whatever stretches/breathing I’m told to do. I think I disconnect from the troubles in my life best when I’m in a yoga class or a guided meditation. Of course, this option requires me to be physically able to go to yoga that day. Meditation is easier since I can do it lying down just as well. Online/DVD/CD versions of “instructors” work well for me too. Basically, I just need someone else to take the reins and tell me what to do so I can let go of even that for a little while.

 

  • Books.

I’ve always been an avid reader, but sometimes I think that my chronic illnesses have made me even more inclined to pick up a book. If I can lose myself in someone else’s life then I can focus on their problems and forget about mine for awhile. Sometimes,  I sit for hours – and then get a shock in my joints when I go to get up (whoops). For those few hours, though, I was able to forget about everything and I find that temporary release of those problems help me recharge.

  • Movies/TV.

These, of course, are similar to books. For me, this doesn’t work nearly as well. I find my mind wandering off, and I just can’t focus as well. I think that might be more of a preference and habit thing, and I know that TV and movies work well for a lot of my friends. When my brain fog is really bad, I much prefer movies and TV because I don’t have to keep track of such a complicated plot and numerous characters.

 

  • Aerobic exercise.

This one, like the yoga, depends on my physical ability that day. If I’m capable, even a few minutes on the elliptical seems to be worth it for me. The exercise releases endorphins, and that really helps. There’s also something about sweating away the day’s troubles that helps me to let go of things that are eating at me. It’s almost as if I sweat them out of my mind.

  • Pretty Plants.

Much to my mother and grandmother’s chagrin, I am absolutely not a gardener. Even when gardening wouldn’t have required all the sun-proofing procedures that being outside does now, I just never enjoyed working out in the garden. However, pretty plants seem to help my state of mind a lot. (Shocker, right?) On a philosophical level, I think that the plants remind me of seasons, and that things get better and worse in cycles. It’s a nice reminder that even if today is an awful day, tomorrow might be better. Or the next day. Or the one after that. …. Eventually, things end up on an upswing again. Plus, they’re just … pretty!

 

  • Vacations.

I find that the occasional vacation day helps me out a lot more than long vacations do. I’d rather have a 3-day weekend every couple months so that there’s something to break up the tedium, something to look forward to. That one day goes a long way to reviving flagging spirits and low energy levels. To take a week off, I have to work every day for months on end, by which time I’m completely worn down. Of course, if I had enough vacation days, I’d do more of the weeks off.

  • Tea and a cuddly blanket.

Ok, this sounds silly … but somehow if I wrap a cuddly blanket around myself and make a nice cup of herbal tea it tends to make other things sort of soften around the edges. They don’t go away. I’m not distracted enough the way I am with a book, but they don’t eat at me quite as much. Of course, this is best paired with the book, plants, music and/or TV/movie option.

  • Music.

This is such a huge one. I can’t even be more specific, because the type of music and all depends so much on what I need and why I need to recharge. Mental or physical strain? Do I need to be social or lock myself away to achieve it? Either way, music is pervasive and with the advent of wonderful little mp3-playing devices, I love that it’s always possible to get away from the world for a few minutes as needed. It’s my easiest, most flexible option.

  • Group/friend therapy.

I’m very lucky to have reliable friends – both in real life and in the internet worlds who are always around to support me. Sometimes there’s nothing that works better than to discuss life’s trials and tribulations with someone who can be supportive and cast perspective. My friends always know what I need to hear – and aren’t afraid to tell me even when what I need to hear isn’t necessarily what I want to hear. Even when nothing is particularly wrong and I’m just feeling low, a lunch/dinner/coffee/skype date with a good friends always lifts my spirits.

 

  • Treats.

I’m not a big eater. The gastroparesis doesn’t help this at all. Plus I’m (still) trying to lose the prednisone and lyrica weight, so I don’t tend to indulge much in treats. It seems silly but treats, either comfort foods or something so decadent I that I rarely indulge in it, are often all I really need to put me back on feet.

I’d love to hear what you all do to recharge. I’m always looking for new, wonderful ideas!

I promise to get an update post up as soon as I can manage it. Sorry for my absence, friends.

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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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Filed under advice/suggestions, coping, work series