Category Archives: shout outs & thank you’s

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

Best Conversation I Had This Week

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:

Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

*note: I had to approximate the conversation, since I didn’t have a transcript. I’m using “friend” instead of her name, since I didn’t get a chance to ask her if it was ok for me to post this here.

Friend: I just read your latest post about the time capsule. LOVE.

Me: Aw. Thanks!

Friend: But, you know, there isn’t enough of YOU in there. It’s all about your disease.

Me: Well, yeah, I guess … but it’s a HEALTH time capsule…

Friend: Sure. But you aren’t your disease! When people open up that time capsule, you want them to know about you and how you lived with your disease. Not just about the disease. You are NOT your disease.

Perhaps this seems like such a little thing, at least on the surface. Here’s the thing, though: those of us with a chronic illness seem to spend half of our conversations trying to explain this to people. (The other half we spend trying to convince them that we’re sick in the first place. Ha.) So when a friend actually comes out and says this, it’s like a huge victory. At least, it was to me. This conversation definitely made my whole week. It was nice to know that at least one person in my life realizes that there is more to me than my disease (even if I don’t always manage to).

(For the record, I did go make some edits to the time capsule post.)

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Filed under "...said WHAT?", blog carnivals/grand rounds, shout outs & thank you's, 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..?

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

Goodbye to You, My Twitter Friend

Last night I found out that one of my very first twitter friends @Beautiful1Amy (@cute1amy before she changed it) had passed away. She had been in the hospital for awhile now, but I still spoke to her fairly regularly and never saw this coming. To say I was shocked and devastated would really be an understatement. I spoke with her at least a few times a week. She was always there for me in good times and bad. She always had a kind word, a saucy comment, a book recommendation or a word of advice and I can’t imagine what it will be like without her. She was on 23 years old. Far, far too young to be gone. My life, like my twitter stream, will never be the same without her. I can only take solace in the fact that at least her pain and suffering have been relieved now. Goodbye, dear Amy, thank you for being such a wonderful friend.

For all that I get riled up when people (*cough* Dr. Phil!) say that lupus is no big deal, isn’t dangerous, isn’t real I sometimes find myself playing it down. Ok so some of that is probably a coping response to the stress. Still, I occasionally miss a med time or knowingly overdo it and I say “oops” as if it’s no big deal. Sometimes when you’re sick all the time it’s easy to forget how dangerous that illness can be, and how important it is to be careful. Or, even if you’re careful, how threatening the illness can be on a whim of it’s own. I find myself chastised and resolved to be ever more diligent against monster that is lupus.

In loving memory of Amy. RIP.

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Selena Writes: A Letter to the Healthy People In My Life

Oh My Aches and Pains! — Selena Writes: A Letter to the Healthy People In My Life. Monday, August 23, 2010.

I DID NOT WRITE THIS LETTER!  For the original, please follow the link above.  Many, many thanks go to my wonderful friend Selena (@selenamki) for allowing me to share this beautiful letter with my readers!

Dear Healthy Person In My Life,

I live with chronic illnesses: fibromyalgia, myofascial pain, thoracic outlet syndrome, dysautonomia, chronic Hepatitis C infection and type 2 diabetes.

They are called chronic illnesses because currently there are no cures for them.

Without a cure, these chronic illnesses will be a part of all my days.

The only thing I can do is manage my chronic illnesses.

Managing my illnesses takes a team effort between my doctors, my supporters and myself.

The most important way I have found to manage my illnesses is through self-help techniques (like pacing, planning, resting, asking for help, setting limits and saying no.)

Managing chronic illnesses is like having a job, except I work 24 hours a day, 7 days a week without pay or benefits.

There is no vacation, no escape from chronic illnesses.

Having chronic illnesses means that my life has been forever changed.

For example, I can no longer remember what it feels like to have a day without chronic pain or chronic fatigue.

Having chronic illnesses doesn’t mean that I am a bad person or did something horrible; they are not a punishment for past sins, weak character or lack of action on my part.

Having chronic illnesses doesn’t mean I can’t do anything, but it does mean that there are some things I can no longer do and changes the way I approach doing everything else.

Having chronic illnesses means that I will disappoint you with my lack of ability to be an average, normal, healthy person.

You may feel frustrated, angry or upset with me–know that I feel all those emotions and more when faced with my physical limitations.

Know that my goal is to live my best life despite chronic illnesses.

Know that I have not given up hope that maybe one day things will be better for me.

Until that day, managing my chronic conditions has to be my number one top priority.

The best ways you can be there for me and back my efforts to manage my chronic illnesses are:

  1. to love me
  2. to listen to me
  3. to believe me
  4. to support me
  5. to help me
  6. to respect my limitations
  7. and to be patient with me.

Thank you for reading my letter.

Sincerely,

Selena

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One Lovely Blog Award!

So my darling friend Annie Martin (@fragileannie) over at It’s Time to Get Over How Fragile You Are granted me this award. As a new blogger, I am truly honored to have even been considered.

As acceptance of this award, the following criteria should be met:

  1. 1. Accept the award, post it on your blog together with the name of the person who has granted the award and his or her blog link.
  2. 2. Pass the award to 15 other blogs that you’ve newly discovered.
  3. 3. Remember to contact the bloggers to let them know they have been chosen for this award.

I suppose the “only pick 15 blogs rule” is to make sure that this keeps getting passed on, but it sure is hard to choose only 15 (even after ruling out all the blogs that Annie has already listed). There are so many great blogs out there – and I’ve only discovered a few of them. So please don’t be offended if I don’t list your blog. I still love you, promise! On the flip side, if I double list one by accident … sorry about that too. (P.S. these aren’t ranked!)

 

I also included public Twitter IDs (if your blog is listed and I didn’t include your Twitter handle either I don’t have it or it’s privacy protected. Let me know if you’d like it to be added and I’ll edit this post.)

Definitely check out these amazing blogs… I hope you all enjoy them as much as I do. (and I’d love it if you leave me a comment with the other great blogs you’ve found)

  1. Leslie at Getting Closer to Myself has really inspired me through her posts (case in point).  She even has an interview with Sarah Gorman, author of Despite Lupus!
  2. Dr. Snit at Living With Lupus- But Dying of Everything Else has one of the best blogs I’ve seen. So much blunt honesty. You laugh and cry along with her. Show her some love and she’ll send 2x as much love back your way. Check out her Twitter too! (@drsnit)
  3. Tiffany at Living La Vida Lupus does an amazing job advocating for and supporting fellow lupus and chronic disease sufferers as well as informing us about new studies, events, etc. Such a loving soul! She writes a great Twitter too. (@tiffanyandlupus)
  4. Kathy over at The Fibochondriac writes an amazing blog. She covers a variety of topics, so definitely check out her “previously posted” page for archived entries! (@fibrochondriac)
  5. Melanie at College Life with Lupus constantly reminds me that I’m not alone in the trials of trying to manage school and lupus at the same time.
  6. KL at And Then Life Changed writes a blog I just discovered recently. She writes with such frank honesty, it’s really amazing how much she can open up.
  7. Carla writes Lupus and Humor writes a great blog that alternates between funny posts and interesting updates. Don’t miss her songs – she’s not called “the Singing Patient” for nothing!
  8. Christine at Living, Laughing & Loving With Lupus doesn’t post as often as some other bloggers do, but her posts are honest and heartfelt.
  9. Michelle at The Life and Times of a Girl with RAis a new another new find for me. She’s a new blogger – definitely go back and read her archives. Worth the time!
  10. Shweta at  its no more in my head is quickly becoming a good internet friend of mine. Her blog is a nice balance between life updates and RA-related posts.
  11. Laurie at A Chronic Dosewrites a fabulous blog. She has published a book Life Disrupted, which I haven’t had a chance to read yet… but if her blog is any indication, I’m sure it will well worth the read.  (@achronicdose)
  12. Ashley at Ashley’s Journey to Wellnesshas 17 amazing posts so far. I’ve been getting to know her via Twitter and she is one amazing lady!
  13. Dannette at FibroHaven is the founder of the FibroHaven Support Foundation. Her blog is poignant at times and equally in your face starkly honest at others.
  14. Rachel (@GlassofWin) at  Glass of Win writes a very different kind of chronic health blog. I love reading about all the adventures she goes on despite being born with a congenital heart condition!
  15. Nancy at Chronic Connection writes an absolutely amazing blog. Her weekly goal setting inspires me to do the same!

SPECIAL MENTIONS: These aren’t chronic disease blogs, but I really enjoy them. Besides, we aren’t defined only by our illnesses right? These 2 are good fun, so check them out if you find some time or need a pick me up.

  • Enna at Kosher Pork Chops writes one heck of a hilarious blog, and one heck of a twitter too (@superenna). Well worth checking out if you’re looking for some solid entertainment. One of the first places I go if I’m having a rough week!
  • (@whatkindofgirl) at Not That Kind of Girl … Trying to explain this one is beyond me, you have to read it to believe it!

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through the looking (or sometimes bulletproof) glass

This blog post was included inGrand Rounds: Customer Service in Healthcare hosted by Debra Gordon at “A Medical Writer’s Musings on Medicine, Health Care and the Writing Life.”

This blog post was included in Chronic Babe Carnival #10: How Do You Deal With The Medical Establishment?

People with chronic illnesses spend a lot of time in doctor’s offices. Or, to be more accurate, we spend a lot of time in their waiting rooms. We sit there reading ancient issues of People Magazine. (If we’re lucky, that is. More often, we’re stuck idly flipping through a magazine about some weird or obscure topic like moths, wondering why on earth the office would choose to subscribe to THAT magazine given the hundreds of options out there… ) But the magazines are the least of our worries.

I’d guess that almost every one of us has a horror story or two to share about interactions with the staff. They double book appointments then make us wait for hours upon hours. They don’t tell us how much paperwork we have to fill out until we arrive, then say we have to wait now because we missed our appointment time while we were filling it out… and after all that they then proceed lose it. Don’t even get me started on incorrectly billed visits that lead to hours wasted arguing with insurance companies. Getting a copy of your medical record is a royal pain: you have to request a copy on the specific day that the staff member is around, and then come back the next week to collect it. There was a lot of truth to that Seinfeld episode in which Elaine is trying to get a look at her medical record…

Still, how many of us have seen life from the other side of the counter? I’ve worked as the triage greeter in an Emergency Room and, repeatedly, as the person who discusses research studies with you and acquires your consent. Let me tell you something, it isn’t too pretty on the other side either. There are mountains upon mountains of paperwork. Despite your best efforts at an organizational filing system, things somehow end up in the wrong places. Scheduling is a nightmare – people are never available when you need them to be. Most of the staff are overworked and underpaid. In some emergency rooms, they’re stuck behind a bulletproof glass just so that they are safe at work.

We are frustrated people, and I don’t think we’re out of line to be. We deal with an awful lot of pain, endless medications, exhaustion, eating restrictions, and people who don’t understand what we’re going through. We need to take out our frustration on someone, and they often bear the brunt of it because… well, because they’re the contact people… they give us the bad news that we’re number 50 in the queue … or that the paperwork we spent an hour filling out last time has been lost and must be filled out again …  that the next available appointment isn’t for another 6 months… and so on. How many times per day do they deliver bad news? More times than I’d like to disappoint people, I’m sure. I think I’d feel terrible. And their frustration shows when they start getting snippy at us.

The thing is though, we spend so much time getting frustrated about their failures that we rarely thank them for the favors they do manage to grant us. I’ve seen them use up their personal text messaging (SMS) allowance to communicate with me because I can’t take calls during class times. I’ve seen them call and argue and shout and plead with scan labs to please, please squeeze in an appointment for me. I found out from the lady running my scan once that the secretary at my doctor’s office had called every day for the past month to see if an appointment had been cancelled in order to get me an earlier one. She never told me that, she just called and informed me “an appointment has opened up” … and let’s not forget when they squeeze us in because, as hard as we tried, we were too sick to make it to our scheduled appointment the week before. Or we desperately need an appointment that very day.

Think about the demands that we make … please be open more hours, please have more staff on hand, please magically fit us in… are they reasonable? Not always. Doctors have lives too – and most of them have their own illnesses, we just don’t know about them. Even if they could hire more doctors and more staff to be open longer, can we really afford for our healthcare costs to go up even further? We want them to upgrade their systems so we can book online like the dentist’s office (or some other clinic) let’s us do, but more efficient systems require money – and appointment slots cancelled in order to train staff. It takes time for those things to be implemented. I agree that they’re fantastic, and I think most clinics intend to implement them – when it’s possible. And as for fitting us in… no doubt we are definitely in need of an appointment ASAP… but it’s easy to forget that the people who are scheduled for that appointment slot we want might have been waiting for months just like we’ve been asked to. We get irritated when someone is squeezed in ahead of us, but forget that we were irritating someone else when they managed to squeeze us in last week. All those patients that are ahead of us on the list might be just as much in need, but it’s easy to forget that. They’re just theoretical. We don’t have names or faces to make them real. Meanwhile we can feel our own pains and want them to just stop already.

A lot of times our frustration IS well placed, but I think it’s only fair to thank them when they help us out. (If we even know that they’ve done that for us). So the next time you’re having a frustrating experience with the staff at your clinic or hospital, remember: they’re only human.

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