Sunday, August 11, 2013
Short Blogging Hiatus
Hello! It is my daughter Samantha's last week home and I am spending every free moment I have with her. I sincerely hope to "see" you all again once I resume blogging on either Sunday 8/18 or Monday 8/19. Until then, I wish you health, happiness and a little inspiration to boot.
Wednesday, August 7, 2013
The Spoon Theory
When I woke up yesterday, I was reminded yet again that having an autoimmune disorder has affected just about everything that my life was not so long ago. After lying awake in pain for several hours in the middle of the previous night, I awoke to discover that I could not close my jaw. The left side of my jaw had suddenly become so swollen and painful that I could not make chewing motions or close my jaw farther than allowing a full inch of space between my top and bottom teeth. Pre-lupus Kassie would have flipped out. Lupus Kassie thought, “Huh. That’s new,” and got out of bed to wake Samantha and start the day.
I had been looking forward to yesterday because of a conversation I had had with Mark last weekend. After I had to temporarily run out of a gathering we were at so that I could throw up, Mark became concerned. However, because Mark is a boy, his concern sounded a lot like annoyance to me. He knew that I had been struggling with severe pain the night before and hadn’t been able to keep down either food or pain meds that morning. “You don’t take the time to properly take care of yourself,” he grumbled. (Boy-speak for “I am worried about you… Please do something about it!”)
If I hadn’t had a mind-bending headache, I probably would have yelled. Instead, I simply growled back, “I am doing the best I can. I have Samantha and work and by the time I’ve done my work for the day and played with her, I am too exhausted to brush my teeth, let alone do anything constructively healing lately.” This will hopefully not always be the case. Things have been worse lately since going off Prednisone and lacking any meds that are actively working in my system (Come ON Plaquenil. Kick in!!!). But lately, I have been struggling and doing the best I can with what I have. Hence, why exhausted, vomiting and pain-filled Kassie was more than a little annoyed with Mark’s “duh” comment.
Rather than get defensive at my response, his voice softened and he said, “I want you to have what you need. Pick any night I’m free next week and Samantha and I will have a night out. You can do anything you want that will help you relax and feel better.” Ummm… OKAY!!! I couldn’t even resist that offer on “I’ll miss Samantha” grounds because I knew she’d be thrilled at the prospect of spending an evening painting the town with Mark. Because of a kind offer from Mark, I was suddenly in possession of a free Tuesday night in which to do anything healing I pleased.
However, I spent most of Monday night lying awake in pain and woke up without the ability to close my jaw. I stumbled through Tuesday so exhausted that it took everything in me to wash my dirty hair. After taking a nap, I woke up to the thought, “I really need a nap.” (That realization was followed by awareness of my situation and a GIANT sigh).
By the time that Tuesday evening rolled around, all I wanted to do was curl up in bed and have a pity party. But I couldn’t respond to Mark’s kind offer by spending my precious healing night having a pity party. So I headed to Barnes and Noble to research lupus healing while eating Jello and other foods that require no chewing. It was then that I stumbled upon numerous references to “spoons” on lupus support websites, tshirts and blogs. After Googling “Lupus and Spoons” I discovered “The Spoon Theory.”
The Spoon Theory is a piece written by a lupus patient who runs the website “ButYouDontLookSick.com” which just might be the best chronic and invisible illness website name ever. I encourage anyone curious about what it is like to live with an active autoimmune disorder to read the piece (it drags at the beginning, but reads so very true when it comes to the actual “spoon” explanation).
Simply put, the spoon theory holds that the main difference between individuals dealing with an actively symptomatic autoimmune disorder and healthy people is that we autoimmune patients have to weigh every single decision we make throughout the day with far more consciousness. Unlike other people with seemingly boundless energy, we have to engage in conscious energy management with every small and large decision.
The author (sitting in a diner with her best friend) explains that every unit of energy autoimmune patients have to get through the day is represented by a spoon. If you have 12 spoons (energy units) to get through your day and every taxing experience costs you at least one spoon, you have to manage those spoons carefully. You might not choose to shower because that will cost you a spoon and you know you’ll need that spoon later to put gas in the car.
My summary is not brilliant (and the theory is better explained here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/). However, the spoon theory gives me comfort and validation that other autoimmune patients have the same struggles I do. On good days, I might have 25 spoons at my disposal. On the worst days, I might have five. The concept of energy management is something my doctor has been drilling into me but that I have neither totally understood nor constructively embraced. I am a “do-er” by nature. I generally refuse to accept that I have limits and must manage my energy. But the spoon theory, as odd and slightly unfocused as it is, has reminded me that these limitations are a matter of health rather than a source of fault or shame on my part.
I had been looking forward to yesterday because of a conversation I had had with Mark last weekend. After I had to temporarily run out of a gathering we were at so that I could throw up, Mark became concerned. However, because Mark is a boy, his concern sounded a lot like annoyance to me. He knew that I had been struggling with severe pain the night before and hadn’t been able to keep down either food or pain meds that morning. “You don’t take the time to properly take care of yourself,” he grumbled. (Boy-speak for “I am worried about you… Please do something about it!”)
If I hadn’t had a mind-bending headache, I probably would have yelled. Instead, I simply growled back, “I am doing the best I can. I have Samantha and work and by the time I’ve done my work for the day and played with her, I am too exhausted to brush my teeth, let alone do anything constructively healing lately.” This will hopefully not always be the case. Things have been worse lately since going off Prednisone and lacking any meds that are actively working in my system (Come ON Plaquenil. Kick in!!!). But lately, I have been struggling and doing the best I can with what I have. Hence, why exhausted, vomiting and pain-filled Kassie was more than a little annoyed with Mark’s “duh” comment.
Rather than get defensive at my response, his voice softened and he said, “I want you to have what you need. Pick any night I’m free next week and Samantha and I will have a night out. You can do anything you want that will help you relax and feel better.” Ummm… OKAY!!! I couldn’t even resist that offer on “I’ll miss Samantha” grounds because I knew she’d be thrilled at the prospect of spending an evening painting the town with Mark. Because of a kind offer from Mark, I was suddenly in possession of a free Tuesday night in which to do anything healing I pleased.
However, I spent most of Monday night lying awake in pain and woke up without the ability to close my jaw. I stumbled through Tuesday so exhausted that it took everything in me to wash my dirty hair. After taking a nap, I woke up to the thought, “I really need a nap.” (That realization was followed by awareness of my situation and a GIANT sigh).
By the time that Tuesday evening rolled around, all I wanted to do was curl up in bed and have a pity party. But I couldn’t respond to Mark’s kind offer by spending my precious healing night having a pity party. So I headed to Barnes and Noble to research lupus healing while eating Jello and other foods that require no chewing. It was then that I stumbled upon numerous references to “spoons” on lupus support websites, tshirts and blogs. After Googling “Lupus and Spoons” I discovered “The Spoon Theory.”
The Spoon Theory is a piece written by a lupus patient who runs the website “ButYouDontLookSick.com” which just might be the best chronic and invisible illness website name ever. I encourage anyone curious about what it is like to live with an active autoimmune disorder to read the piece (it drags at the beginning, but reads so very true when it comes to the actual “spoon” explanation).
Simply put, the spoon theory holds that the main difference between individuals dealing with an actively symptomatic autoimmune disorder and healthy people is that we autoimmune patients have to weigh every single decision we make throughout the day with far more consciousness. Unlike other people with seemingly boundless energy, we have to engage in conscious energy management with every small and large decision.
The author (sitting in a diner with her best friend) explains that every unit of energy autoimmune patients have to get through the day is represented by a spoon. If you have 12 spoons (energy units) to get through your day and every taxing experience costs you at least one spoon, you have to manage those spoons carefully. You might not choose to shower because that will cost you a spoon and you know you’ll need that spoon later to put gas in the car.
My summary is not brilliant (and the theory is better explained here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/). However, the spoon theory gives me comfort and validation that other autoimmune patients have the same struggles I do. On good days, I might have 25 spoons at my disposal. On the worst days, I might have five. The concept of energy management is something my doctor has been drilling into me but that I have neither totally understood nor constructively embraced. I am a “do-er” by nature. I generally refuse to accept that I have limits and must manage my energy. But the spoon theory, as odd and slightly unfocused as it is, has reminded me that these limitations are a matter of health rather than a source of fault or shame on my part.
Monday, August 5, 2013
Guest Blogger: My Daughter Samantha
(After talking to my girl about my blog and how I write about what inspires and motivates me, she chose to guest blog on an initiative she is inspired to start at her middle school this coming year. I am truly proud of her vision and hope you enjoy learning about it!)
Hi! For those of you who don’t know me, my name is Samantha and I’m Kassie’s daughter. This school year I am going to be in student council, and I’m excited because I plan to make a difference.
It will be difficult to reach this goal because as a 7th grader in a world of adults, it’s hard to stand out and be heard. Talking to adults can be intimidating to some of us, but others just aren’t taken seriously by older generations.
Bullying is a big deal in the world of kids and teens. The worst thing for some of us is we feel we can’t speak up about bullying or that if we do speak up that no one will listen. I’m not saying adults don’t care, I’m saying that most of us kids feel our problems can’t be bothered with in the world of politics, unemployment, and international crime. Some kids say why would he care about Sue calling me a bad name at school when Daddy is a big politician worried about a stock market crash. I think that adults should care about these things that are happening with us kids, because it should be a big deal in everyone’s eyes.
Bullying is a damaging and hurtful thing that happens to people of all ages, not just children. Sue might turn into an emotionally abusive boss to the same child she bullied back in elementary school, because someone didn’t stand up to her. Bullying is a big problem everywhere in the world, and I feel that if we don’t try to stop it when people are young that it will continue.
If adults made their kids feel like they can tell them anything that is going on, there would be less bullying. I’m not saying bullying would stop, because that isn’t realistic, but it would be a start.
At my school there is a group called the UpStanders. The UpStanders is a selected group of Student Council members that have been trained to talk to their peers about their problems. The frustrating thing about the UpStanders is that you’re not allowed to come to them with a bullying problem because the teachers want you to go straight to a counselor/administrator with this particular issue.
I think that there should be a group that kids can go to with bullying problems. The group would be like a practice round for kids so that they would feel more comfortable talking to adults about their bullying problems. Talking to peers is easier than talking to adults, so it would give them courage to talk to the adults about bullying and give them reassurance that they will be heard. It would also give them support because the person they had talked to could help them when talking to adults so that they will feel more comfortable and brave.
I think that this group will really help my peers stand up for themselves and feel safer in our school. I’m confident in my plan, and excited to try and help reduce bullying in my school.
Hi! For those of you who don’t know me, my name is Samantha and I’m Kassie’s daughter. This school year I am going to be in student council, and I’m excited because I plan to make a difference.
It will be difficult to reach this goal because as a 7th grader in a world of adults, it’s hard to stand out and be heard. Talking to adults can be intimidating to some of us, but others just aren’t taken seriously by older generations.
Bullying is a big deal in the world of kids and teens. The worst thing for some of us is we feel we can’t speak up about bullying or that if we do speak up that no one will listen. I’m not saying adults don’t care, I’m saying that most of us kids feel our problems can’t be bothered with in the world of politics, unemployment, and international crime. Some kids say why would he care about Sue calling me a bad name at school when Daddy is a big politician worried about a stock market crash. I think that adults should care about these things that are happening with us kids, because it should be a big deal in everyone’s eyes.
Bullying is a damaging and hurtful thing that happens to people of all ages, not just children. Sue might turn into an emotionally abusive boss to the same child she bullied back in elementary school, because someone didn’t stand up to her. Bullying is a big problem everywhere in the world, and I feel that if we don’t try to stop it when people are young that it will continue.
If adults made their kids feel like they can tell them anything that is going on, there would be less bullying. I’m not saying bullying would stop, because that isn’t realistic, but it would be a start.
At my school there is a group called the UpStanders. The UpStanders is a selected group of Student Council members that have been trained to talk to their peers about their problems. The frustrating thing about the UpStanders is that you’re not allowed to come to them with a bullying problem because the teachers want you to go straight to a counselor/administrator with this particular issue.
I think that there should be a group that kids can go to with bullying problems. The group would be like a practice round for kids so that they would feel more comfortable talking to adults about their bullying problems. Talking to peers is easier than talking to adults, so it would give them courage to talk to the adults about bullying and give them reassurance that they will be heard. It would also give them support because the person they had talked to could help them when talking to adults so that they will feel more comfortable and brave.
I think that this group will really help my peers stand up for themselves and feel safer in our school. I’m confident in my plan, and excited to try and help reduce bullying in my school.
Friday, August 2, 2013
Chopra-Oprah 21-Day Meditation Challenge
I had a “duh” moment in late June while my rheumatologist was asking me about my yoga and meditation practice. I had sheepishly admitted that I was having a difficult time with maintaining a daily yoga practice lately because of my bulk and my pain level. She responded by asking how frequently I was meditating without doing yoga. My blank look told her all she needed to know.
I have glued my meditation and yoga practices together for so long that it did not even occur to me to meditate independently of my yoga practice. I live in a frustratingly noisy apartment building, so somewhere along the line I stopped meditating unless I was in a yoga studio. After a brief and not unkind lecture about how important it is for autoimmune patients to relax, I realized that I was going to need to find some way to meditate on days I couldn’t make it into the yoga studio. Because quite simply, I am absolute crap at really relaxing unless compelled to try.
Because I struggle with gargantuan tasks like “sitting still” and “being quiet,” I have recently been working with guided meditation resources. I have found some to be so cheesy that I spend more time rolling my eyes and arguing with the prompter than I do being still. But some have proven to be an excellent fit for me.
While researching additional resources recently, I stumbled upon the free (free!!!) 21-Day Challenge efforts being hosted by Oprah’s Lifeclass and Deepak Chopra. I have never been a Chopra follower, but I do love some of the more soulful programming on the OWN network. I basically watch OWN exclusively on Sundays because of how inspired I have been by certain episodes of “SuperSoul Sundays” and “Masterclass.”
It seems that beginning August 5 (this Monday), Oprah and Deepak Chopra will be launching a 21-Day Meditation Challenge focused on healthy relationships. Challenge participants will be granted access each day to guided meditations, written materials and other resources provided by the hosts. I am not 100 percent sure what to expect, but I am absolutely game. Anyone who would like to check out the challenge can visit this site: https://chopracentermeditation.com/home#show_invite
In the coming weeks, I will almost certainly be occasionally discussing healthy relationships within the contexts of training and healing. I have wanted to tackle this subject for a variety of reasons for some time now and I am sure that taking the 21-Day Challenge focused on healthy relationships will inspire me to finally do so. Until I check in again on Monday, have a wonderful, happy, healthy weekend.
I have glued my meditation and yoga practices together for so long that it did not even occur to me to meditate independently of my yoga practice. I live in a frustratingly noisy apartment building, so somewhere along the line I stopped meditating unless I was in a yoga studio. After a brief and not unkind lecture about how important it is for autoimmune patients to relax, I realized that I was going to need to find some way to meditate on days I couldn’t make it into the yoga studio. Because quite simply, I am absolute crap at really relaxing unless compelled to try.
Because I struggle with gargantuan tasks like “sitting still” and “being quiet,” I have recently been working with guided meditation resources. I have found some to be so cheesy that I spend more time rolling my eyes and arguing with the prompter than I do being still. But some have proven to be an excellent fit for me.
While researching additional resources recently, I stumbled upon the free (free!!!) 21-Day Challenge efforts being hosted by Oprah’s Lifeclass and Deepak Chopra. I have never been a Chopra follower, but I do love some of the more soulful programming on the OWN network. I basically watch OWN exclusively on Sundays because of how inspired I have been by certain episodes of “SuperSoul Sundays” and “Masterclass.”
It seems that beginning August 5 (this Monday), Oprah and Deepak Chopra will be launching a 21-Day Meditation Challenge focused on healthy relationships. Challenge participants will be granted access each day to guided meditations, written materials and other resources provided by the hosts. I am not 100 percent sure what to expect, but I am absolutely game. Anyone who would like to check out the challenge can visit this site: https://chopracentermeditation.com/home#show_invite
In the coming weeks, I will almost certainly be occasionally discussing healthy relationships within the contexts of training and healing. I have wanted to tackle this subject for a variety of reasons for some time now and I am sure that taking the 21-Day Challenge focused on healthy relationships will inspire me to finally do so. Until I check in again on Monday, have a wonderful, happy, healthy weekend.
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