Tag Archives: friends

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

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.


Filed under coping, insensitivity/ignorance, introspection, rant

10 Things I Couldn’t Live Without

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:

10 Things I Couldn’t Live Without. Write a list of 10 things you need (or love) most.

NOTE: This is the post for Friday, April 13. I’m doing my best to keep up with the HAWMC topics day by day, but it’s proving hard with full time work.

(I’m choosing to skip the obvious ones like food, water, shelter, clothing, etc)

1. My comfortable bed, because I spend so much time sitting in it.

2. My Kindle/books.

3. My heating pad.

4. Epsom Salts. (Oh the wonders these do for my aching, swollen joints!)

5. The Internet, both to waste time and to connect me with the world when I’m stuck in bed.

6. My iPhone, because where would I be without twitter?

7. My music. Essential.

8. TV/movies/Hulu/Netflix Instant.

9. Herbal teas.

10. Supportive FRIENDS and FAMILY.


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

Dear Doctors, THIS is Who I Am…

This post was written for the Patients for a Moment blog carnival hosted by Diana Lee at Somebody Heal Me

The topic was “Who are you without your disease? What makes you more than just your disease? How have you adapted these aspects of your life so they’re not completely overcome by your illnesses?”

Dear Doctors,

To you, I am a medical record number and an attached diagnosis. You see me in lab test results, medical file notes, and medication logs. You see my signs and symptoms and what has been prescribed to treat them. What you don’t see is … ME.

Medicine is supposed to be about treating the patient not the disease, but the reality is that 15-30minutes to review how I’ve been, assess how I am now, and consider options for the future leaves little time to get to know me. So here is a little peek into who I am outside of your exam room:


… expect you to see me as more than my disease, even though I sometimes struggle with that concept myself.

… will drop you in an instant, even if it means waiting 6 months for another doctor, if I think you are condescending in any way. I am not an idiot, I know my body and I know enough about what is used to treat my ailments that I won’t stand for someone talking down to me. If you don’t listen to me, I don’t see any reason why I should have to listen to you.

…  am loyal to a fault.

… am ready to forgive, but never to forget.

… but not forever. I have zero tolerance for people who take advantage of me or take me for granted. I refuse to be in one-sided friendships.

… will never be found without a book near at hand. Of course, this is stressful for my wrists, so these days you’ll probably find me with my Kindle in my hand. My disease my make my wrists hate paper copy books, but I will never let it take away my love for reading.

… would do just about anything for the people who love me.

… love to travel, but almost never get to do so.

… don’t eat meat. No matter what you have to say about it and my nutritional (or malnutritional) state.

… don’t practice any religion, and don’t take kindly to people trying to convert me to theirs. As far as I’m concerned, the Dalai Lama has said it as well as I ever could: “Kindness is my religion.”

… you will probably never know it, but I write this blog. I do so because I know that there are thousands of people out there that don’t have access to resources any more than I did. I hope that I can be a resource for them.

… won’t eat the same thing two days in a row if I can help it. When it comes to food, I definitely need variety. Across different cuisines if at all possible.

… am still afraid of the dark, and not ashamed to admit it.

… love dogs, but hate rodents and will run out shrieking at the site of a cockroach.

… manage to handle the physical pain I live with, but can’t bear to see others suffer.

… have an unreasonable collection of shoes, clothes, and makeup. Yes, I know this. No, I probably won’t stop buying them.

… work full time. Ok, this one might be in your files. What might not be is that I don’t do it simply to be in defiance of your orders. I do it because I struggled to feel like I am a contributing part of my society, and I can’t handle that feeling.

… cannot be held responsible for punching you if you tell me that something is “all in my head” or “I don’t look sick.”

… am irrevocably hurt by betrayal.

… wish that there was a support group for people my age living with lupus or other similar diseases. I know you keep telling me that I need one, but I just don’t connect with the group that does meet.

… hate when you describe the mechanism of medicines to me like I’m a two year old when you can clearly see that I’m using pharmacological terminology. I hate that. Same goes for any aspect of my illness.

… work in clinical research, so I actually talk to breast cancer patients all day. And it kills me that I can’t actually tell them how much I understand some aspects of what they’re going through.

… hate talking to on the phone to anyone other than friends and family. If I can do something by internet or letter I will.

… of course, this doesn’t really work out, because I have to spend hours on the phone arguing with my health insurance provider.

… don’t tell anyone at work anything about my illness. In fact, I don’t even tell them that I’m sick. This means hiding my medical ID bracelet.

… attended medical school, and had to drop out because of my illnesses. And you didn’t. So I will always resent you for that.

… will not trust anyone until they have proven they are worthy of trust. This includes you. You have to earn it, just being a doctor doesn’t mean I’m going to bow at your feet and accept every word you say at face value.

… believe that an excellent bedside manner absolutely matters.

… think that some of you should never have gotten into medical school, and ought to get off your high horses. You’re not better than me just because it says “MD” after your name.

… and, finally, I have the most respect for doctors who actually ask about my life outside their exam room, instead of skipping that section of the medical history.

So the next time that I walk into your clinic, please remember, that THIS is who I am.


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Filed under blog carnivals/grand rounds, community education, coping, insensitivity/ignorance, introspection, rant

Dear 16-year-old me,

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:

Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?

Dear 16-year-old me,

I could tell you all the things that are going to happen in the next 10 years, but I think it would take some of the fun out of living. So, instead, let me tell you the life lessons I have learned in that decade of life…


…are so much stronger than you think you are. You can deal with so much more that life throws at you than you can even imagine.

…are not alone in this world. Friends and family will support you. Stop trying to do everything all by yourself. Life doesn’t work that way.

…need to remember that things that don’t always go the way you plan. You have to accept this, and believe that something else will work out that will still make you happy.

…ought to understand that some things aren’t meant to last. Enjoy them while you have them, and let them go in peace.

…need to believe that you are beautiful – no matter what. This means no matter the weight gain, the puffy face, the swollen joints, the hair loss, or the face rashes.

…should realize that friends who abandon you when they hear news that should make them want to support you were never truly your friends in the first place. Let them go. You’re better off without them.

…must learn to take chances. This means putting yourself out on that ledge that you’re so scared of, and not hiding behind your well-built wall that keeps people out so that they can’t cause you pain. Some things require taking a chance. Yes, you might get hurt … but you life can’t move forward without those risks.

…are a good friend to people, because you love and believe in them. They won’t always be good friends to you. Know that this doesn’t mean that you aren’t worthy of their friendship, but rather that they are not worthy of yours. You don’t need to be a loyal friend to people who aren’t loyal to you. Don’t waste time on people who don’t see your true worth. If they can’t figure out how wonderful you are, it’s their loss. Chasing after them won’t convince them to change their minds. Focus your energy on people who see and love you for you. Those are the people who deserve you.

…must do this most of all: Learn to love yourself. Learn to love yourself despite everything in life that makes you not want to. At the end of the day, only you truly know yourself, and if you don’t love yourself it’s awfully hard for you to let anyone else love you either.

There are so many more things I would love to tell you, but I think some things have to be learned through experience….

Love always,



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

Health Time Capsule

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:

Health Time Capsule – Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of when they found it?

If I were making a time capsule about my life with chronic illness, here are the things I would definitely include:

  1. A big refillable med case, because putting in all the pill bottles sitting in my drawer would be a little nuts.
  2. Snacks – just in case the evil Sir Prednisone hasn’t been annihilated yet. Let’s face it, you can’t be on prednisone and survive without some snacks. (I can’t promise they’d still be edible after 100 years though…) but I can only hope that we wouldn’t need Sir Prednisone anymore. If I were truly optimistic, I’d hope that our diseases would be long gone by then, of course.
  3. Heated blanket or snuggie. Plus wool socks. I’m always freezing.
  4. Sunscreen, hat, sunglasses. I don’t go anywhere at all without those.
  5. Heating pad for the muscle ache. Can’t live without this one.
  6. Some movies and TV shows on DVD – lovely when stuck in bed.
  7. Epsom salts to soak out the stiffness and swelling in my joints.
  8. A phone for twitter. How could I live without my twitter friends??
  9. If they would be willing, I’d love to include little testimonial notes from all my twitter friends. My experience alone wouldn’t be able to give anyone an accurate & complete picture of what it’s really like to live with a chronic illness.
  10. Copies of my blog posts. (Ok, so I’d like to flatter myself that they’d still be relevant and maybe even useful to someone.) I think these would hopefully explain a lot more about why I included a lot of these items. Including them without explanation wouldn’t be helpful, but I’m not sure that I could explain any better than I already have.

EDIT: My friends have informed me that there is not enough of ME in here, only my illness. So here are 5 more things that I would add to my time capsule that represent me.

  1. A kindle – reading is probably my biggest hobby. I couldn’t live without books. Illness or no. Taking away my books would be like taking away my ability to breathe.
  2. iPod – with different music for every mood. Music helps me through some moods and helps me get into others. I usually have some sort of music playing in the background.
  3. Potted flowers, because I love plants and nature, but can’t really be outside. Flowers are cheery, but cut flowers make me sad so I think I’d put in potted flowers. (Yes, I realize they wouldn’t survive in there for 100 years, but …)
  4. Pretty shoes, jewelry, lipstick, and fashion mags. Being sick doesn’t mean i cant enjoy prettying myself up.
  5. Passport and various restaurant menus – I love to travel and see different parts of the world, and I love to eat different cuisines. Hmm.. I wonder if any of those restaurants would still be there when the capsule was opened..?


Filed under blog carnivals/grand rounds, introspection, shout outs & thank you's, WEGO Health Activist Writer's Month

Sunday Breakfast Club: Toy Story (NO SPOILERS)

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.


Don’t worry. I won’t ruin the movie for you. I WILL say that Toy Story 3 was hilarious. I enjoyed it the most of the 3. Added bonus: compare the improvement in animation from Toy Story 15 years ago to this one. Amazing. The premise of the movie – as determined from the TV ads and previews – is that as our darling Andy is going off to college, the toys are getting donated to a preschool. Here’s the other thing we learn: not all toys are created equal. Well, okay. They’re CREATED equal, but as they endure different lives they become very different. So do we.

So here’s my topic for today: Do you ever feel like the toys?

I do. I feel like my friends have moved on to the next phase of their lives and I’ve been left behind … and the most irritating part is that I feel like I should be waiting around for them to come to their senses and need me again… and I hate it. It makes me feel pathetic. That being said, does anybody blame the toys for waiting around? No. … but we don’t blame Andy for moving on to college either.

The concept of a disappearing friend syndrome (anyone know who came up with that phrase?) is not a new one. You will find mention of it all over the blogs, discussion boards, chat rooms and Twitter feeds.

The reasons for it are many fold, but when you really think about it they come down to 2 key points.

  1. We don’t always make the most reliable friends. We often end up cancelling last minute – and that’s just the events we think we MIGHT be able to manage in the first place. Of course, we are not fully to blame. We obviously can’t help that we are ill. We should be able to rely on our friends. Isn’t that the whole point of friends?
  2. Our friends don’t understand. So how do we fix this one? Well, we can’t fix it any more than we can fixt point one. There is only so much educating we can do. Even the amazing Spoon Theory can only go so far if people aren’t willing to listen.

Where does this leave us, you ask? Well, it leaves us exactly where we started. Except for one key fact – we, like the toys, have each other. As much as it often feels like are alone in the world having been abandoned by most of the people we hold near and dear, it’s easy to feel lost. I do. Even knowing that I have all of you, I still feel alone sometimes. Let’s face it, sometimes you want a flesh and blood friend… because I do honestly feel that not everyone has abandoned me because they can’t or won’t deal with the trials of an ill friend. I think some of them really just don’t get it.

So I ask you – what, if anything, has worked to help your friends to understand?


Filed under breakfast club, community education, coping, introspection