PFAM: Holiday Wishes

Merry Christmas readers!! This month, I asked my fellow spoonies what their thoughts were on the holiday season. If they could ask for anything (without being worried about offending someone), here’s what they came up with:

Leslie at Getting Closer to Myself came up with a Christmas wish list of items that she’d love for Christmas. Like my own virtual shopping lists, these include both things that she’s admiring and things that help her as a chronically ill woman, reminding us that while someone is ill, that isn’t their entire identity, so not all their holiday wishes are illness-related!!

Rachel at Fluted Cups and Ampersands reminds us that just because thinking about illness makes you uncomfortable or feel guilty or anything else, it’s okay to talk about it. Part of coping with illness is helping other people around us cope with it. We need people to lean on, and we also understand that you are not superwoman. (That’s part of the miracle of illness; we learn our own mortality but we also become sympathetic with others’ mortality.) Let us help you; allow us to make this a two-way street where you give but you also receive.

Duncan of Duncan Cross points out that holidays can be stressful for those with chronic illnesses. Just because we recognize our mortality doesn’t make us immune to the stress of the holidays. Duncan says that holidays (1) destroy routine, (2) require (physical & emotional) work, and (3) are in the winter. All of these are especially taxing on the ill. So please cut us a little slack. (And Duncan: I didn’t beg; I inspired.)

Elizabeth of The Girl with Arthritis gives a tutorial on how to hug someone with a chronic illness, particularly one with inflammatory arthritis. If we somehow summoned the strength to make it to a holiday event or even to crash on your couch, we’d prefer that your gratitude not make our condition worse. Learn from Rachel on how to safely hug someone who’s physically hurting. And think about waving or shaking forearms (instead of hands) to reduce the amount of germ-spreading. We’d be eternally grateful.

Ms. Rainbow of RARainbow quotes the Dalai Lama saying: “Our prime purpose in life is to help others. If you can’t help them, then at least don’t hurt them.” Instead of bullying someone whose life is different than yours, learn more about their situation or just smile. Even the smallest act of kindness can mean the world. (Ms. Rainbow, great quote by the Dalai Lama; I’ll have to file that away with my memory of meeting him!!)

Rihann Louise of My Brain Lesion and Me notes that “Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year. The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.” It’s so true. I’ve started writing holiday cards to the people who have been the most supportive. Just writing a note saying why they’re so valuable to me as friends has been profoundly therapeutic to me and also fits right into the spirit of the holiday. Because really that’s what we need the most: your support. (At least that’s my holiday wish.)

That’s all, folks, for this month’s round of Patients for a Moment. Look for some new and exciting things happening in the new year. Among them, Duncan Cross, founder of PFAM, is starting an online book club for patients. Every three months, the book club will read, review, and discuss a book about illness and disability. If you would like to participate, or suggest a book, get in touch with Duncan at dx@duncancross.net. (Note that both I and Leslie already have book lists, so if you’re looking for some “light” holiday reading, here are some suggestions.)

Best wishes and happy holidays,
Abigail

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PFAM December 2013: Call for Submissions

Holiday Wishes at the Magic Kingdom
Miss Cinderella’s Wishes

Calling all chronic patients, spoonies, caregivers, medical professionals, and human beings!!! I’m hosting this month’s Patients for Moment carnival, and I want YOU to participate!!!

Each month, Patients for Moments hosts a blog carnival where we ask each participant to write a short blog post (or even a comment to someone else’s blog post), contributing their thoughts on a given topic. The more thoughts (and perspectives) the better, so come on in and join the party. Loyal participants, novice writer, or long-time silent reader: you are welcome.

In the spirit of reflection and gearing up for the holidays, this month’s topic is your holiday message. What is it that you would tell your Aunt Sally when she says, I really wish there was something I could do to make your life better? Is there something you wish you could say to that friend who says Call me if you need anything?

Peace, Love, & Holiday Wishes
share with us your holiday message

If you didn’t have to worry about hurting anyone’s feelings or being prim and proper, what is that you would ask for or want people to know? Do you have a message of encouragement for our community? A request for support or encouragement or even basic understanding?

To participate, please email me at abigail.cashelle (at) gmail (dot) com with the title and blog url of your post by December 12. Please include PFAM in your subject line. OR if you don’t have a blog, feel free to comment directly on this post.

The final edition will be showcased here on December 15.

Best wishes (& many spoons to you),

Abigail Cashelle

What Chronic Fatigue Syndrome & Ehlers-Danlos Syndrome Feel Like

For the PFAM carnival, Duncan wants to know what my illness feels like. Well, Duncan, since you asked, my illness feels like ASDLKHGA[OYI2(&^#!$LJBFAPDGI09*^@~(*^{KLJAHSDGO[YAWEGFB;L. Got it? Oh wait, that’s how I feel about my illness.

imagine being the pea (rather than the princess)

What does my illness feel like? Well, it’s awful. There are no words to describe it. It makes you feel like you’re buried under a mountain of mattresses and like you can’t get out. In order to do anything (like walking across the room and putting your laundry away), you feel like you’re a robot trying to learn how to walk while waist-deep in an ocean of molasses. Things like light, smell, food, and inpatient people stress me out and stress causes pain which causes fatigue which causes me to lose weight (but also have something to talk about in therapy.) Illness numbs my mind so I easily lose my train of thought or just can’t think because wait, WHAT are we talking about again? That’s what chronic fatigue syndrome feels like.

Plus the pain. I don’t have any way to adequately describe the pain. Except that a pain scale of 1-10 is just WAY too simplistic. I can tell you about persistent, throbbing, intense, background, fluctuating, numbing, stabbing, and localized pain. I can tell you about achy pain, about the feeling that you can’t use your eyes or ears correctly & you guess that can be called pain too?

Ehlers-Danlos syndrome or a connective tissue disorder (if that’s what I have). Well, pretty much that means that anything is more dangerous, so you’re constantly having to be alert. Try doing that at the same time as battle brain fog. There’s no point in trying to have energy for anything else. Anyways, I have to be really careful when I walk or reach for things or lay down or write or whatever, because my body is super flexible. That means I can sit in some really awkward position and not even realize it until six months later I’m trying to figure out what that stabbing pain is in my hip. Oh? Sitting with your legs double-crossed isn’t normal??? Ooops. My left elbow gets pulled out of joint pretty easily, so I have to make sure I don’t slam that elbow against the wall while I’m asleep or try to lift things with just my left arm. It means that I fall really easily so I have to wear tennis shoes all the time, and even then I’ve fallen on flat surfaces and had to spend months in physical therapy. It means that I can’t wear fun shoes like all my friends and they like to make fun of me for it. It means that I have to wear long sleeves and leggings if I want to be outside at night in the summer; why? Because I bruise really easily and mosquito bites turn into bruises and then I look like a victim of child abuse or maybe domestic violence now that I’m older. It also means that I don’t have a typical response to almost anything, so add a huge amount of frustration to everything.

in case you forgot what Oscar the Grouch typically looks like

It means that I come across as a very cynical person. Abigail, are you sure you need to wear leggings to watch fireworks? I mean, why are you so worried about people thinking you’re a victim of abuse? That’s ridiculous. Everyone can see that you’re happy. OR Abigail, why don’t you ever want to have a good time? Maybe things will just be fine this time. Mostly, I’m just very practical. I’ve discovered things like if I’m around loud noises for an hour, sometimes I’ll be in bed for four hours recovering. So guess what? Going to that church service just isn’t worth it. Or it takes forever for those bruises to heal, so I’m not taking my chances. Because people do ask.

I’ve become an Eeyore. He’s cynical and doesn’t look at the bright side of anything. But, he’s still pretty happy. He’s not like Oscar the Grouch. He has friends, and he cares about them. He likes the color purple and knows that going to a birthday party is important. He just looks at life differently. Because that’s who he is. And so, most of the time, I have Eeyore days. I’m being honest & transparent. That might come across as Eeyore the cynical. And that’s okay. Because I like Eeyore.

In fact, I’ve decorated my bedroom with an Eeyore theme.* Just a little bit. And more in a sophisticated way than nursery decor. It’s not super obvious because I didn’t want to overwhelm my friends with doom and gloom. But seeing him makes me happy. Because he gets me. That life is hard. And painful. And exhausting. So he’s peeking out of various nooks and crannies.

And to give you a glimpse of what my room could look like, I compiled this treasury on etsy. It’s a bit much, especially since I have nowhere near that many light switches to cover. But it’s the general sentiment.

with love (and honesty),

Abigail Cashelle

___

*I gravitate towards smiling Eeyore though. He’s surprising not that hard to find. But you do have to look. And that’s the Eeyore I know.

PFAM June 2013: Getting the Attention You Need

This month’s topic for the Patients for a Moment blog carnival is “getting the attention you need”, especially the medical attention that you need as a chronic patient.

Barbara at In Sickness As In Health explains that she takes her husband with her to appointments. That seems to get male doctors’ attentions (though not female doctors), but it also gives her an extra layer of support. Someone else gets to do the remembering, the telling, the thinking.

Rhiann Jones at My Brain Lesion and Me gives us a list of suggestions for tackling medical appointments. Lydia Hendry at A Path through the Valley offers another list of ideas. Take notes. Be assertive. Are you writing this down??

Duncan Cross admits that he’s gone to some extremes to get the attention he needs from doctors. Now he just uses the dreaded phrase “suicide ideation” to get their attention and prevent them from ever prescribing the “miracle drug” again. (Right there with you Duncan.) It’s what some other folks called “brutal honesty”.

Rachel Tanner at Fluted Cups and Ampersands admits that you can’t always get what you want, but that one of the things that chronic patients want besides getting attention from medical professionals is for ordinary people in their life to care!! Just because we have an illness doesn’t mean that we become superhuman and don’t need friends just like everyone else.

A few folks got inspired by the prompt and ran with it. While these posts interpret “attention” differently, I think they are helpful to give us a bigger view of what’s going on here. After all, that’s usually the problem we have with medical professionals (or just our friends). They only see the convenient facts.

Emma at Your Doctor’s Wife explains that even she can’t get Dr. H’s attention and she’s married to him!! She’s fallen and wound up seeing stars, a situation that could be considered a medical emergency. Nothing happened. No Superhero Dr. H coming to the rescue. Isn’t that supposed to be the whole point of having an in-house medical expert?? While her story is somewhat hilarious (if you’re not Emma), it does highlight the importance of knowing a person’s vocabulary and being willing to speak their language.

Lydia points out in her post that if you listen to someone, they’re more likely to listen to you. I’ve discovered that principle as well. It’s easy to forget that doctors are people as well, but that change in attitude can be helpful if you want to be seen as a person!!

AfternoonNapper points out that there are multiple ways of advocating for patients and for getting certain types of attention. She writes about Regina Holliday and her art project ‘The Walking Gallery’. “The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits…. This “walking wall” of 200 individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts…. They are providing a patient voice, and by doing so, are changing the conversation.” The whole idea is so cool, and it’s something I hadn’t thought about when it comes to getting the attention I need for my very specific situation: the power of community! If you’re creative, community can really push for change, for much needed change, in a way that no one person can.


All in all, it’s a tough topic. It’s something chronic patients face every day. But I’m encouraged that the response from everyone is not just to wither in frustration and berate “the system” that works against us. People have strategies, and they keep trying. And, we eventually do find help. Maybe not exactly the way we want or from the people we expected to give it, but we do get what we need. eventually. There are ways to be proactive. And if it makes us better people, better citizens, better sons and daughters, in the mean time, I guess I can’t complain too much.

Abigail Cashelle

Edited to add a late submission: Tonja at the Pink Doberman adds her own perspective of living with a traumatic brain injury and getting the help that she needs.

Doctors are People, Too, You Know

As I’m reading submissions coming in for this month’s PFAM on “getting the attention you need”, I have begun to realize that my original concept was somehow flawed. I wanted to fight against the streamlining of healthcare, the homogenizing of symptoms and of feelings. I hate the way in which my symptoms don’t matter because it’s not cancer or the fact that I have absurdly low blood pressure is a “good” thing. But in the desperate need to get some attention for myself, I blurred together all healthcare practitioners, thinking that there must be a cookie-cutter way to get the help I so desperately want.

life of a grader

Because I look younger than I really am, most physicians don’t take me seriously as an adult. I’ve spent hours lying in bed trying to figure out what I can do to give an “adult” first impression. I remember really clearly that the first physician that took me seriously as an adult was Dr. Leo. At the time, I attributed it to the fact that I was grading blue books. Only someone who teaches college students would be grading blue book exams; therefore, I must be a college teacher and must be an adult. QED. But really? I think Dr. Leo would have taken me seriously as an adult even if I was reading Christian fiction. Because that’s the kind of person that he is. He’s not in a hurry, he’s willing to listen, and he doesn’t easily dismiss things even when he thinks they might be tangential.

Dr. Voluble knew that I was a graduate student. In fact, he spent many, many minutes telling me how I could be a better graduate student. (Outside his scope of practice, anyone?) It wasn’t that he didn’t know that I was an adult; he took that and ran with it, ran in an unhelpful direction.

Maybe I care about people too much. Maybe I’m hypersensitive to what’s going on around me. Maybe the girl who prayed for her classmate who was battling a hangover during class has turned into the girl who prays for the exhausted pregnant nurse. Maybe it’s just a part of who I am. But I’ve discovered that part of getting the long-term care that I need is getting to know my physicians (and other healthcare providers.) Not in a creepy way. Always maintaining professional boundaries, of course. But taking the five seconds to say, I hope you have a good day. OR congratulations on your promotion. It’s not just about giving them a token of appreciation. It’s about changing your attitude. It’s about realizing that you’re not feeding information to a robot in the hopes that the robot will give you the proper feedback. This is one human being talking to another. You’re paying for their expertise, their care, so the focus is on you and what you need. But that doesn’t make them any less human.

In the past year, I’ve had a healthcare practitioner win a major research award from the university, someone who moved to a new state, someone whose toddler died unexpectedly, two physicians who fell and strained their knees, and someone who is expecting a (first?) child. I either saw announcement elsewhere or the information had some bearing on scheduling and the like. None of these affected my plan of care directly. But I did find myself spending the five seconds to say Congratulations or I’m sorry.

not what medicine is supposed to be (except maybe Dr. Google)

Over the long term, these observations did change how I approached these practitioners to get the help that I needed. For the first few months, the physician who lost a child seemed lost in his own grief and frequently lost his train of thought. In my interactions with him, I kept everything really succinct and tried not to say, I need help with the following seven things. I picked the items that were most important and then presented them individually. I respected that it was hard for him to be back at work and tried to be patient. (I did consult other physicians about things I would normally have asked him, and I did wonder whether things would ever return to the way they were.) But I need his expertise and his genuine care for me, and at the time, that meant adjusting my strategies for getting the help I needed.

It was similarly with the physicians who strained their knees. One physician seemed extra happy and pointed out that being strong and working through any pain is the only path to healing. (See? Me too!!) The other physician was in a lot of pain and hobbling around the exam room, so he was extra irritable. Half of me was upset. I pay good money to see you, and how dare you not be in tip-top condition to devote your full attention to your client. This is a service-oriented industry, and you’re not giving me the service you advertised!!!! The other half of me understood. It’s the end of a very long day for him. Just take a deep breath, and figure it out. He’s trying really hard to help you even though he probably wishes he was a million miles away.

I don’t know if this is a rambling post about the Golden Rule. I don’t think it’s a post about accepting reality even though it’s less than ideal. But I do firmly believe that if we want people to see us as humans with specific needs and lacks, we owe it to them to view them that way as well. If we’re not parts on an assembly line, they’re not robots assembling either. Medicine might seem like a giant bureaucracy or one big monster, but in the exam room, it shouldn’t be.

Abigail Cashelle

PFAM: Call for Submissions — Getting the Attention You Need

Please Pay Attention
would a neon sign work??

Greetings, folks!! I’m hosting another edition of the Patients for a Moment carnival. Each month a host solicits submissions on an illness-related theme. No need to suffer from a chronic illness yourself!! If you care for someone you love who has such an illness or if it’s your job to, we welcome your perspective as well. We’re here as much to complain about life as we are to learn about it.

This month’s theme is: getting the attention you need. In the hustle and bustle of medicine and healthcare, it’s easy for patients with long-term (and confusing) illnesses to be dismissed. We know that we’re hard to comprehend, and we’re not an easy problem to be solved. How do you get your healthcare practitioner to take you seriously and give you the time and attention you need?

As human beings, we like quantifying things, simplifying data in a way that streamlines the process of understanding it. Those simple questions: how would you rate your pain on a scale from 1 to 10? or what’s your birth date? or let’s see how much you weigh today. Do they really capture the magnitude of the problem? I’ve had doctors obsess about the fact that I keep losing weight or the fact that I’m “too young to feel this sick” so therefore I must be another whiny teenage girl. There are ways in which people try to quantify or rationalize illness that obscure a lot of things. They’re useful for figuring out whether someone sprained their ankle or broke it but perhaps not so useful in other situations.

pay attention to me mister
eyes on me
NOW

What do you do? How can you bring information to the table or be a cooperative patient without being dismissed? Besides firing impossible practitioners, what are strategies that you’ve developed?

Everyone is welcome to share a blog post reflecting on “getting the attention you need”. To participate, please email me at abigail.cashelle (at) gmail (dot) com with the title and blog url of your post by June 12. Please include PFAM in your subject line.

The final edition will be showcased here on June 15.

Remember: no submission is too small or big. I can’t wait to hear & to learn from you.

Happy writing!!

Abigail Cashelle

PFAM: Recharge?

Duncan is hosting Patients for a Moment this month, and he asks us how we recharge. Well, Duncan, funny that you should ask. I just got home from a whirlwind weekend of visiting family, attending a wedding, and seeing some old friends. Right before that, I just finished a whole semester of working really, really hard to try to satiate the ravenous lion only to wind up leaving my graduate program. Oh, and to top it all off, I’m battling massive inflammation of unknown origins; after the last specialist told me that she was SO glad I was responsible and came in to see her, then she capped the exam by telling me to go home and “be well”. (Ummm, yeah, I think Dr. Bryan was right when he said, Well, if only it was that easy.)

So apparently, I have been charged to “be well” and all I feel like is being trapped under a mattress (or 500). There are a million things I could be doing like applying for jobs or doing laundry (or updating this blog or reading my own email!), but I just don’t feel like it.

iPhone 3GS Low Battery
except my battery has about -5% remaining

I’ve decided that I need to take a week off. A week where I do nothing. So far it’s been interesting. I’m not sure that I’m getting better. But, the key thing here is that I’m not getting worse either. And in the world of vicious circles of downward spiraling symptoms, that is a MAJOR accomplishment.

Some of my friends have come over to visit me. They’ve brought food and presents and fun stories. But mostly I’ve just tried desperately not to fall asleep when they’re here. Diana even came and watched a movie with me, and I wound up laying down on the futon through almost all of it.

It’s hard not to do anything. But I’ve decided that in order to recharge, I need to stop doing stuff. Just say no, so to speak. Just roll over and keep sleeping. And not feel guilty for not doing anything. All the stuff I normally do to recharge? Have friends over, write letters, work on crafts, play the piano….. Yeah, I don’t have the energy for those either.

After all, someone called me yesterday about a credit card application. After about 30 seconds of me trying to think and failing miserably, I just told him to nix the application. I was so glad it wasn’t someone following up on a job application. Because I would have probably told them the same thing. And when a girl gets like that, it doesn’t matter what things are on her to-do list. Recharging gets priority. Because this girl has been running on empty for far too long.

Abigail

PFAM February 2013: Medical Literacy

This is the February edition of the “Patients for a Moment” blog carnival.

Literacy (noun): the ability to read and write; competence and knowledge in a specific area

How much should a chronic patient be expected to understand about his own medical condition? How much information are medical practitioners expecting him to bring to the table?

I’ve had conflicting opinions on this. I’ve had extremely fruitful conversations with doctors like Drs. Leo and Samuel where I’ve attempted to talk in their language. Gregory helped me put together a medical resume of my medical history that I’ve faithfully carted around to medical appointments for the past year or so. I find myself calling Dr. Bryan or Elliot when something comes up and I’m confused. At the same time, I’ve also worked in a hospital before. I remember those patients who thought they knew what they were talking about… but really didn’t. We had a name for them: annoying.

Barbara of In Sickness and In Health discusses the importance of researching your own condition. She deals with the fine line between being informed and being paranoid. It’s useful to know what the key terms are and what signs one should look for. At the same time, it’s awfully easy to fall into medical students’ disease where one thinks one experiences the disease currently being studied!!

Toni at Turning Straw into Gold talks about the ways in which one can approach internet research and how to bring up issues to your physician or medical practitioner without being snobby. I found her concept of diplomacy helpful.

Aviva of Sick Momma discusses why she started becoming mistaken as a medical professional. Simple knowledge of what has already been done gives command of the situation, which can save chronic patients from going around and around in circles, repeating the same (pointless) diagnostic tests.

Lydia of A Path through the Valley talks about medical literacy as a way to embrace your own identity. As a chronic patient, chances are that you’re the one who has to live with the consequences of it day in and day out. Maybe it’s a good idea to have a clue what it is you’re living with??

From the opposite perspective, Emma at Your Doctor’s Wife tells how the assumption of medical literacy can lead to some interesting conversations.

And Dr. Bryan shared on a social networking site a fantastic story about how medical literacy isn’t always everything. Medical professionals are trained to look for certain things and ask certain questions. If you’re coming at a problem from a different perspective, chances are that not only will you miss something they’d see but that you’d also see things they’d never think to take note of. And that can be important in the field of medicine, especially if you’re facing a disease that you’re going to be dealing with for a long time.

All in all, I gather that the consensus is that being an informed citizen can be useful. If nothing else, it can give you confidence in an immensely confusing situation (when it’s not making you quake in your boots.) I’ve found that finding information and asking questions can be useful; I like being able to have conversations with medical professionals about this new info and new questions. I also find that having a medical resume and being in command of your care makes sure that you don’t get swept under the rug in the 5 minute check-ups. And, it’s always fun to have a laugh at the ridiculousness of the medical profession. Not that any other profession doesn’t have its weaknesses… but it’s good to laugh every now and then.

Abigail Cashelle

Disclaimer: I didn’t get very many submissions, so I was expansive in what I considered to be submissions. I hope that this paints a fuller picture and also is helpful to those of us who, for reasons out of our control, have to face this issue fairly often.

Hosting “Patients for Moment” Blog Carnival: Call for Submissions

Literacy_OEDWelcome!!

I am honored to serve as host this month for the “Patients for a Moment” blog carnival. Each month a different host solicits submissions around an illness-related theme. There’s no need to be chronic patient!! We welcome perspectives from persons in all walks and stages of life. As each of us struggles to come to terms with the realities of illness and medical care, we benefit from the perspectives, insights, and experiences of each other.

This month’s theme is: “medical literacy”. To what extent has this been a part of your medical journey? Is this a necessity? Is this something empowering? Does this give you a stronger voice with health practitioners? For those of you who interact with patients (or interact with people who interact with patients), is there a benefit to “medical literacy”? If so, what is beneficial “medical literacy”?

Everyone is welcome to share a blog post reflecting on “medical literacy”. To participate, please email me at abigail.cashelle (at) gmail (dot) com with the title and blog url of your post by February 12. Please include PFAM in your subject line.

The final edition will be showcased here on February 15.

Remember: no submission is too small or big. I can’t wait to hear & to learn from you.

Happy writing!!
Abigail Cashelle