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Summer Weddings & The Sun

This post was featured in ChronicBabe Blog Carnival #31: Summer Plans

Last weekend I flew out to Tennessee to the wedding of a very close friend. The only thing more beautiful than the service was the bride. I was honored to be invited to a wedding that ran (as far as I could tell) without any major glitches. The only problem? The wedding was outside. Don’t get me wrong, it was a beautiful location and it suited the couple perfectly …… but it was outside without shade. One hour in the sun without shade, as it turned out.

I can’t be the only one with plans that involve the sun. Summer is prime wedding season, plus there are barbeques, picnics, and various other parties. Everything seems to be planned outdoors in the summer. (Especially if you live in the Midwest where summer is short-lived and must be taken advantage of.)

Whatever the event, those of us with lupus need to take special precautions to stay out of the sun. I was very bad this weekend (as far as my lupus and rheumatologist are concerned), but I did my best.

  1. SUNSCREEN. I can’t stress this one enough. Sunscreen is very, very, very, very, very important.
  2. HATS. I’m hoping that they’re going to make a come back following the royal wedding, but even if they don’t … hats are important for sun protection. I have 3 or 4 of them that I wear. I found one with a lace band and flower for the wedding, but you can easily interchange your ribbons. Check out a clothing store for ribbons and lace to help make your hats part of your summer wardrobe!
  3. SHADE. This was not a possibility for me, but if at all possible you should find some shade if you can.
  4. PARASOLS. Some elderly ladies at the wedding had these, and I was j-e-a-l-o-u-s!!!! These need to make a major fashion come back. Even if they don’t, I’d get one if I could find one at a reasonable price.
  5. COVER YOUR SKIN. I packed a cardigan to wear over my dress. I fully intended to wear it – I had it with me at the wedding. Unfortunately, I suspected heat stroke might be an issue if I added any clothing if I wore it. All the same, try to keep your skin covered. Long sleeved, thin, cotton tunics are a great option as you won’t boil in them!

Does anyone have any other great suggestions as far as protecting yourself from the sun?

EDIT:

Things I forgot or were suggested by my wonderful readers:

6. SUNGLASSES. I don’t go anywhere at all without these. Score forgetting to put this on the list up to brain fog.

7. SUNGUARD. Apparently you can wash your clothes with this and it imparts some sunscreen protection. I haven’t tried it yet, but I will go out and look for it soon.

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“Love and Other Drugs”

image from wikipedia

I just watched this movie. It’s about a girl who has been diagnosed with early-onset Parkinsons disease, and is learning to deal with the implications of a life of debilitating chronic illness ahead.

She’s only a year older than me in the movie, so that was something that really hit close to home. Granted, she’s dealing with a different illness, but a lot of the underlying adjustment issues are similar. Most notable, in the movie, was the question of relationships and marriage.

Throughout the movie, Maggie is fighting to not only come to terms with her illness but also the implications it has on her life plans. This means figuring out how to deal with the illness and also how to deal with any future romantic relationships. This struck home for me. It’s something that I’ve personally been dealing with a lot lately. (I’m sure my poor friends @fragileannie and @kimbellybull could testify to this, as they are the ones who usually have to listen to me.)

All the symptoms, so many meds at so many times during the day, plus the doctors appointments and lab draws. Then there are the cancellations on previously made social commitments and the major changes to life plans post diagnosis. I mean, I can barely even manage to deal with my illness myself. My parents are clearly still coming to terms with my new life too.

With that in mind, how can I ask someone to sign up to deal with something that I can barely deal with myself? Aren’t relationships hard enough without all these extra burdens? It isn’t easy to watch someone live with pain and suffering. Is it really fair for me to ask someone to put up with all this extra pain?

Of course, being stuck at home doesn’t make it easy to find someone worth dating. As @fragileannie pointed out the other day, what I need is someone who likes to stay home a lot so he won’t be fussed that I need to be home a lot. Too bad both of us being home a lot makes it really hard for us to meet. Heh. The point is, though, I’m not really sure I’m even actively looking anymore. I’m not convinced it’s fair to the other person. I know enough people who struggle with their spouses/life partners/boyfriends/girlfriends/etc acceptance of their illnesses and limitations. That being said, I know enough people with chronic illnesses who do have happy, supportive relationships. So it’s possible. I guess this is something I’m still struggling with myself, but it was really interesting to watch this movie and watch how Maggie dealt with this issue.

it ain’t over ’til it’s over

Last night, I went to a 16th birthday party. There was cake, a live band, a cash bar for the adults, and lots of food. There was only one thing missing: a birthday girl. The little princess died 8 years ago of cancer. So for what would have been her 16th birthday, her mom threw a benefit. It was a lovely night, and hearing stories about her brought back a lot of suppressed memories. The little girl was like a sister to me, and her death was devastating. This little angelic girl, whose only complaint was that her hair was falling out, who was always ready with a smile and “how are YOU?” was gone.

I think everyone has a moment when they realize that life just isn’t fair.  Then they have a moment when they accept that fact. For some people, that’s the same moment. For me, the realization came when she was diagnosed with leukemia, but the acceptance didn’t come until she died. I guess until that point I kept thinking that something would set the universe right and she’d be cured and grow up to be an amazing person … but nothing did.

The thing is, by 8 years old, she’d already taught me one of the most valuable life lessons I’ve ever learned … life is short. Ok, that was an obvious one given the story, sorry. Here’s the real one: you can’t change some things in life. Some diseases are handed to you without provocation, and you’re stuck wondering “why me?!” Sooner or later you’re going to die. Usually, you cant control when or where or how. What you can control is this: What are you doing now? Who are you making happy? Whose life are you improving? It’s easy to wallow, but it doesn’t help anyone – not even you.

This doesn’t mean that you have to donate thousands of dollars or hours of service. Sometimes, all it takes is a compliment, a hug, an anonymous act of kindness, or even just a heartfelt smile. It ain’t over ‘til it’s over, so what are you doing to make the most of it?

Trick or Treat? The Pranks of Sir Prednisone.

This post was featured in ChronicBabe Blog Carnival #15: Trick or Treat.

 

Yesterday I experienced something new. Not the sort of exciting and new event that you would like to cross of your “bucket list.” Oh no, this was the sort of thing that should be on the list of “embarrassing things that you hope will never happen” to you. Ok, maybe I’m being a little melodramatic. After all, there are many worse things that could happen as the embarrassing stories section of any Cosmo magazine will tell you. (Or, more reliably, probably most people.) So why am I so upset about this particular event? Well, I guess because it is caused by an event that I am so happy about.

There is no end to the frustrations of taking prednisone: increased appetite, osteoporosis, weight gain, moon face, etc, etc, etc. What people often don’t talk about, though, is that prednisone withdrawal is no pretty sight either. To finally get off of a prednisone taper is an exciting event – it’s splendid to be free of it’s side effects. Sir Prednisone, though, is hardly the type to just let you shimmy down the side of his holding tower on your hair like Rapunzel’s prince and scamper off into happy oblivion. Oh no, he makes it brutal. The mood swings are ridiculous – I mean, really, who tears up at the end of NCIS when they get the bad guy? It’s almost comic except that it’s so frustrating. Then let’s add in the debilitating fatigue and the horrible joint pain. My favorite withdrawal symptom, though, is the nausea and vomiting.

Which brings me to my embarrassing moment: forceful, projectile vomiting in a restaurant bathroom. I mean the kind of puking where you don’t even manage to kneel in front of the toilet because a slight bend at the waist and suddenly it begins… and then repeats 5-6x in fast succession. Oh and then I performed that whole routine again when I got home. Except that I had to get out of the shower that time – with the  shampoo still in my hair. That wasn’t my greatest moment. Just in case anyone missed it, I gave a final midnight show. Of course, at that point it was just acid coming up. Beautiful visual isn’t it? To all the empaths out there … are your noses and throats burning yet?? Hey universe, I would like to never do that again, please. Thanks. Curse you, Sir Prednisone. Can’t you just let us go peacefully?

Sunday Breakfast Club: Worst fear? Check.

This post was included in a “Facing Your Fears” edition of the Patients for a Moment Blog Carnival hosted by Selena at Oh My Aches and Pains on Wednesday, October 13, 2010!

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

I’m writing this post at 2:30am, having just returned from a friend’s birthday celebration. I should be sleeping, but I suddenly felt like writing, so here goes… Please forgive me if it’s not one of my more coherent posts..

One of the things that kept coming up in conversations (most of which I overheard rather than participated in) was the phrase “I’m so scared that…” Generally speaking this was followed by a few key phrases. Notably “that I’ll never get a job” or “that I’ll end up an old spinster.” Which instigated in my mind a recall action of all the other “I’m so scared that …” statements I’ve heard over the years. These often included worries about the death of parents. More to the point, it included worries about the speaker’s own health.

We spend all this time worrying about these things. Dreading the idea that the might happen. Worrying about what we are doing that might make those fears a reality…. How many people spend a lot of time considering what we would do if they actually DO come true? I surely didn’t, but here I am.

For those of us with chronic illnesses, one of those major fears has already come true, though. So what now? I guess there are a few options: we can wallow. we can ignore that this was a fear in the first place. or, I guess, we can embrace it. Ok, yes, I know that sounds utterly ridiculous. I mean, who embraces a worst fear come true? Well I’d be lying if I said that I have, or even if I said that I’ve been really trying to. I guess the real question is .. SHOULD I be trying to? Ignoring it doesn’t help me. Neither does pretending this was never something I was scared might happen. Still, I am determined to try to embrace what I can. Make the best of a bad situation, so to speak. Through all the pain and suffering we do learn things. We learn compassion. We learn acceptance. Many of us could probably treat a number of conditions ourselves at this point.

Here’s the real kicker though: this fear of becoming ill doesn’t stop when you are ill. Instead, the fear continues to course through you: you worry your meds aren’t the right ones, you worry about the side effects of those medications, you worry that your diagnosis is incorrect, you worry about all the impact on your life and relationships your illness will have, and most of all you fear the escalation of your illness.

At the end of the day, our situation sucks – no two ways about it. Nevertheless, we can choose to focus on the fear or we can choose not too. We might not be able to control whether or not we have an illness, but we can control how we react to having it.

Sometimes a Whine is a Good Thing

There is a lot of chatter that goes on in the Twitterverse in which the many chronic disease sufferers live online. People use it as a forum for different reasons. Some use it to hear from people who are suffering from similar situations – common circumstances, advice, etc. Others take that one step further and look to interact with those people, to make friends and speak with people who can say “I understand” and actually do.

There is, as is understandably the case, a large amount of what some may term “whining” that goes on in such conversations. I beg to differ. These are trying illnesses that we deal with daily. Incessantly. From the time we wake up until the time we fall asleep – well, if we even manage to fall asleep at all, that is. It’s frustrating. It’s exhausting. We post these tweets because they help us get through the day. To function as best we can in the “real” world of people who don’t understand. Which is why we turn to the people who know what we mean when we post those tweets: the people who are posting similar tweets.

Now, as best as I can tell, much of the argument (often expressed by way of the private “direct message” feature) against such tweets is a complaint that we don’t get very far by posting them. Perhaps people think we take too much refuge in these tweets, too much solace in something that might not affect the “real world” interactions we are invariably forced to take part it. Again, I beg to differ. Sometimes venting our frustrations on blogs and twitter keep us from frustrating people in the “real world” with complaints that they don’t understand. It’s not just about their understanding, it’s also about being a burden. Many of us feel a lot of guilt about the constant demands we put on our loved ones: doctors visits, chores we can’t do, money, and so on. Constant whining seems like one more thing for them to bear, and another reason for them to feel bad for us. Or, as is more prone to upset and induce guilt in my case, to worry about us.

Still, I do think that there should be some efforts made to help those in our “real world” lives understand what we are going through. After all, it seems rather self indulgent to go on in a woe is me nobody understands me vein of thought without at least trying to fix that situation. … but that is rather more easily said than done. Some people fail to understand no matter how many times we try to tell them about it. I’m not ashamed to admit that sometimes I just don’t feel that it’s worth depleting my limited energy stores to educate them.

Frankly, I don’t think anyone has a right to tell me that I’m whining too much – or to tell anyone else that. After all, that is the joy of the internet, is it not? We can choose who we want to interact with. Some people support others by joining in the necessary venting of frustrations, others support with reminders of strength and “I’ve got your back” attitude, still others provide jokes, quotes, or anecdotes. At the end of the day, we interact with the people who provide us with the right mixture of those things – and we try to do the same for them. That is the point of these interactions. Sure, sometimes it might be more helpful to remind ourselves of our strength, but a lot of times I just need to vent my frustrations and talk to people who won’t judge me for doing so.

I do the best I can to be supportive and (dare I say it?) inspirational … but I’m just one girl, who is fighting hard to stay afloat in a sea of constant pain, fatigue, and disappointment. I can’t be upbeat all the time, nor should I be forced to be. I have enough stress and pressure and pain and so on to deal with without adding this layer of judgment. Of course, it may well be that those whining about the whining (*cough*) are annoyed by those tweets because they are just having a bad day themselves. So I’m choosing to shrug off these comments and criticisms that I have received. Take the whines for what they are – a necessary interaction for some. Or choose not to interact with those Twitter users. The choice is yours, fellow whiners, the choice is yours.

what your doctor couldn’t tell you …

This post was featured in ChronicBabe Blog Carnival #7: Tips for brand-new ChronicBabes.

So you’re newly diagnosed with a chronic illness. I’m sorry to hear that..

You’re (probably) relieved to have some sort of diagnosis finally delivered… and (almost certainly) freaking out and scared about what it is and what it means for your life. Chances are, your doctor has sent you home with pamphlets of information, websites to look up, and a pharmacy’s-worth of confusing prescription drugs. They probably warned you what to expect in terms of disease symptoms and medication side effects  …

… but there are some “side effects” that your doctor couldn’t tell you about, because they aren’t in the textbooks … these are some things that I wish someone, anyone had told me. This list isn’t intended to scare you, but I’m also not a big fan of sugar-coating. I guess that should be #1 on the list: you learn to deal with more crap that you don’t want to hear than you ever thought possible. And you will survive that. There will be days when you think you’re maxed out, but you will find that you are far stronger than you thought you were.

I started with the lifestyle things because I think it was the hardest stuff for me to deal with. I included some more practical things at the bottom of the list that I think are really helpful too.

  • “Lucy, you’ve got some ‘splaining to do!” And it will not be as much fun as Lucy makes it seem. It will be incredibly frustrating. Most of your friends and maybe even your family will not understand what you are going through. They wont understand why you have suddenly disappeared from the world – well, their world anyway. They won’t understand why you just can’t get out of bed to see them. Or why you keep cancelling on them. They won’t get why you keep insisting that you’re sick when you look just fine. After awhile a lot of them will give up and slowly wander away. (I’ve written a couple of posts about it, and it seems to be a pretty universal problem in the chronic disease world as far as I can tell. I’ve heard it called “disappearing friend syndrome.”) People find their own ways to cope with this situation. Here are a few that have worked out wonderfully for me:
    • Try sending people a link to The Spoon Theory, it helps a whole lot (but only if they take the time to read it).
    • Join the chronic disease community. We are all over Twitter, the blogging world, etc. Check out http://www.chronicbabe.com. I can’t begin to tell you how helpful everyone has been in my life. (Ok, maybe I can.) Obviously we can’t replace those friends, but a few new friends doesn’t hurt. It really helps me to talk to people who are going through the same pain and frustrations. It took me a long time to be willing to do this. I had a hard time identifying myself as a “sick person,” but somewhere along the way I realized that being part of this community doesn’t mean I have to identify myself that way.
    • Learn when to battle. I used to think every friend was worth fighting for. Maybe they are, but I’m sorry to say I don’t have the energy anymore. You will learn to figure out which friends are neglecting you because they try but don’t understand, and which ones just can’t be bothered. It sounds cliché, but your true friends will stick by you. You will need them. Everyone else, well, [choose your expletive of choice here]…
  • Guilt. Expectations can be a royal pain. Even in perfect health, living up to all the expectations people have of you – and you have for yourself – is not an easy task. When you have a chronic illness, they might be even harder to attain. There’s a lot of guilt involved. I feel like I’m letting down my friends, my family, and most of all myself.  It’s frustrating that you can’t do what you want to do when you want to do it anymore. I don’t have any good advice on this one –I’m working on dealing with it. It’s hard.
  • Free-time is a questionable commodity. Sometimes you will just sleep and sleep because you have no other choice. You won’t always be able to get everything done that you want to. Of course, sometimes you will get tired of sitting around in bed or your favorite comfy chair … suddenly you will have too much free time on your hands. (Yes. It’s possible. Who knew?) But that doesn’t mean you’ll be able to spend it the way you want to. As such, your hobbies may change. Embrace it.

I hope I haven’t horribly depressed you. It certainly wasn’t my intention, but I really wish someone had told me that these things can happen. I couldn’t figure out why my friends had disappeared. I felt like I was doing something wrong… I didn’t realize that these were common occurrences. I hope this is useful for you. If you have any questions or need someone to talk to, please feel free to contact me. gradstdntwlupus(at)gmail(dot)com or @gradstdntwlupus

Practical considerations:

  • Buy a weekly pill box. Maybe one that has more than one space per day if you have meds at different times. The one I got at Target has morning & night spaces plus it lets me pop out each day separately which I find incredibly helpful. Also useful: the little, flat pocket-sized pill holders for when you want to just slip in a couple of meds.

Set aside a time each week to fill in all these boxes. You don’t want to be going through all those different medications at each dosage time. It eats up your already limited time, you’re likely to make mistakes, and if you’re very tired it makes it a heck of a lot harder to take your meds.

  • Make sure you are comfortable in your bed and your room. You will probably be spending a lot of time in it. You’ve probably already experienced this. It tends to get depressing if you’ve got springs digging into your back or your walls are all white, etc. This sounds silly, but I didn’t realize how important decorations and such are until I started spending days at a time in my bed.
  • Take a good look at your wardrobe. Chances are that you have been prescribed meds that make you gain weight. You might end up gaining and losing weight as your meds change  and as your eating habits change to deal with the medication side effects (more hunger vs upset stomach, etc). Slightly stretchy waistbands and looser shirts help you to adapt to those changes so you don’t end up with a closetful of things you can’t wear. Try to buy things in mixing and matching sets, it helps your options a little. It’s tragic, I know.

If you have been diagnosed with rheumatoid arthritis or lupus, chances are you are going to have deal with joint problems. There are a couple other things to take into account: buckles and buttons. Swollen joints in your hands will make buckles and buttons hard to work with. Especially in the mornings when you’re in a rush.

  • Food. Food can be hard if you aren’t living with someone who can cook for you. Figuring out which foods your stomach likes when your drugs make it unhappy is key. Also, if your condition includes fatigue then you probably won’t have the energy to cook all the time. Try to buy things that are easy to cook. Cut and keep them ready or frozen when you have time. On days that you have more energy you can cook and freeze. Try meal-size containers packed with a more or less complete meal. If someone is cooking for you, they might be willing to make a little extra so you can freeze some.