Despite sleeping for about 11 hours (huge feat for me), I woke up feeling pretty miserable. I knew that this was likely the result of doing so much on Thursday (I had a good day Thursday) and the rain moving in, but I forced myself to get up and go to my statistics lab regardless.
Found a parking spot about 10 minutes away in walking distance from my stats building. For those of you with handicapped parking stickers on college campuses, you understand when I say that 90% of the time the sticker is useless, as the handicapped spots are few and far between. I hobbled to class in agony, in the rain, and made it to a bench close by. Sat for 20 minutes debating whether or not to stay for the lab or go back to my car. By the time I came to a conclusion it was time for my lab anyway.
As soon as I sat down in the lab, I knew I had a problem. Have you ever had a pain episode? Where you’re overcome at once with extremely acute pain and lightheaded-ness? (RA Guy talks about his most recent episode here, for reference and better understanding of what I’m talking about). I started feeling panic rise and considered calling the Florida State First Responders to come bring me back to my car, but worried they’d end up wanting to bring me to the hospital because of how weak I was. I shot up from the seat I was in and made a beeline for my car, worried about passing out.
Got to my car, collapsed in the front seat, and cranked the air conditioning. I realized this was the third lab in a row I’ve missed and remembered that I’m failing my stats class (the only class I’m taking right now towards my major), and broke down. A full fledged sob fest.
Index Page— an index of this entire website to help you find exactly what you’re looking for
Chronic Curve Store— products for sale through Amazon that I have read, reviewed, plan on reviewing, or that I use regularly. I earn commissions from products sold through my store and all commissions will go to site maintenance and the scholarship fund I’m working on trying to create. There will be a sidebar widget added but Amazon is currently having issues and not working with me!
The books included in this store are both for the chronically ill and the medical-minded followers I have here. Why include them in with chronic illness-related reading material? Reading about the life of physicians and medical students can give us great perspective on why our doctors do what they do, and there is no question that this helps in our doctor-patient relationships. Plus, always an interesting read.
Is there a reason why you don't write any doctor or nurse's name in your posts?
Yes, privacy and respect. Even the physicians that treated me poorly or acted irresponsibly are entitled to their privacy on the internet. Though I will leave an honest review on sites like Vitals, I will not do so on this website. I don’t particularly want my physicians to either read or be offended by the use of their personal information in my blog posts. That said, if someone in the my area is looking for a good physician and wants a name, I will privately give the information.
I did not think you meant “2 hour ordeal: CT scan with IV contrast, four cups of barium drink for the girl who is already constantly gagging, and a barium enema.”
Any test that comes with a barf bag is not a pleasant one, but I was lucky enough to have had a friend drive and make things a little less unpleasant. We turned the eme-bags into hats…”Wizard hats,” to be specific..
(You know you have amazing friends when they willingly have their wizard barf bag photo up on your blog… and sit with you in a closet-sized room for two hours while you chug down barium drink and gag/snot/spit into tissues. Love you, Kris.)
I can’t figure out exactly where the disconnect was: did the doctor give me a copy of the prescription and send the radiology group a different prescription? Or does the radiology group have the power to decide how contrast is to be administered regardless of what is on the prescription?
I politely declined the unnecessary enema, by the way. Somehow I don’t think an enema is going to help you look at the abscess in my LUQ and the whole morning felt off, like I was being put through unnecessary testing.
I’ll have the report and copy, and hopefully some answers, tomorrow. Ultimately, regardless of how uncomfortable a test is, that’s all that matters.
Hi beautiful, I don't know if you saw the blog I wrote for Wego health about internet creepers but I quoted you in part of it. Just wanted to share that and tell you to check it out because you gave some great advice about relationships with your community. :) Keep up the wonderful work you always do. -Sara
Sorry this took so long to respond to! I did see it, thanks! And likewise! :)
Hi, Just wondering if you find that a certain brand/type of pen is easier to write with and not as a hard on the wrist and fingers?
Can’t lie, I’m a pen snob. I use Uniball Signo ballpoint pens (.38 point— extremely tiny ballpoint and I find it creates less pressure when I write). You can buy them in packs at Office Max or Office Depot and they’re a little more expensive than your cheap Bic pens, but they are nice. When I use bigger tip/cheaper pens, my handwriting is a mess thanks to the RA-hands, so these pens work great for me. They’re light and have a decent grip too :)
Get involved with on campus groups that work for similar causes (perhaps talk to people that run events like Dance Marathon or student government groups), reach out to others through the internet and find people who might be interested in joining you in an awareness/fundraiser campaign, plan thoroughly and conduct the fundraiser responsibly. Look into what your accounting needs are going to be like and make sure you’re familiar with all financial responsibilities (ex: taxes) before collecting any kind of funds. Meet with proper officials before conducting any kind of fundraiser on campus to make sure you aren’t violating a campus policy!
I was just wondering how you kept yourself busy when you took time off of school? I'll probably be sleeping a lot but even if I have to spend all my time in bed, I can't just *sit* there, I need something to do and I'm having a hard time coming up with ideas.
I really struggled with that at first and went into a deep depression. This blog helped pull me out of it. I read a lot of books, bought lots of science and Nat. Geo magazines, and spent a lot of time working on a book of my own.
Lots of tv & movies, as they’re easy distractions and something you can resort to when fatigue and brain fog make everything else impossible. Netflix is always handy. I also recommend the Sims— hours of mind-numbing entertainment.
Get out of the house. Seriously, this is my biggest piece of advice. I made sure to get out of the house no matter what at least once a week to do something fun for myself, whether that meant a five minute trip to Starbucks, a ten minute drive, going to a book store, or having my nails done— whatever— just get out of the house no matter how you’re feeling. Don’t be afraid to see a movie by yourself if you’re up to it. I also did the grocery shopping for my family when feeling well enough because it got me out of the house regularly.
I had a few friends who stopped by that weren’t away at university and kept in touched (skype!) with the ones that were away. Don’t lose touch with friends and self isolate no matter how appealing the idea of isolation might seem. It’ll just make your rough patches at home worse.
My dog was the best form of therapy for me. I highly suggest a pet if that’s at all plausible and you don’t already have one.
Family matters. I was not particularly close with my family when I took time off, but the whole experience actually brought us closer together. My mum and I did a lot together too, which was new for us. Do you like to cook? Bake? My mum and I (and my sister) did a fair bit of that. It was much needed social interaction and made the physical task of cooking easier. I liked to cook dinner a lot too. It just gave me something to do and a reason to get out of bed, something that you need to find to keep yourself going.
Crafts and cheesy tv/movies. Was a frequent flier at Michael’s Craft Store and developed a penchant for Desperate Housewives. Oops? Start watching shows you’ve never seen before or ones you’ve been meaning to watch for a while now. Downloading/discovering new music became an even bigger hobby for me too and I made (and still do) monthly playlists. Indulge your creative side and try a new medium— learn the basics of photography? Illustration? Take a class if you’re up to it? Find an outlet that you enjoy.
Project 10. Ten positive things (typed or written in a journal) about each day, every day. On days where you can’t get to ten or anything at all, go back and read previous entries and remember why you keep fighting and keep holding on.
Make the ultimate bucket list. Seriously, do it. Spend hours online searching for crazy cool places and ideas and see what you can accomplish from your bed! Check out other bucket lists online. It’s a great distraction and good motivation. Plus it gives you lots of ideas for things to do while having a good day/period of time.
Redecorate— I did a lot of rearranging my old space when I came home and really enjoyed that. Feel comfortable in your space— you’re going to be spending lots of time there.
Learn something new. Seriously, go read about something weird/odd. Read the news and stay connected with current events. I learned a little bit about web design and spent lots of time finding new books to get excited about through Goodreads. Creating a themed blog on tumblr sounds a bit boring but if you have a particular interest in something then hey, why not put some energy into that?
Give back, get involved. Find a purpose again if you feel a little lost. Write letters to soldiers over seas (I ended up with a pen-pal this way and it’s been a great experience. I also put together care packages now and then during the “off season”— always something nice to do) or make cards for kids at your local hospital, both easy to do from the comfort of your bed. Look into online writing/volunteer opportunities or make one of your own! Find something that helps someone else and stick with it; it will bring so much light to your life, especially in dark times.
Thinking of you. Hope you don’t mind me publishing this and I hope you find some of these ideas useful! It’s a great list of ideas for others in the same boat.
Do you support the Arthritis Foundation? I don't seem much on your blog about them ever
Yes. I support any foundation that raises money to find a cure for different kinds of autoimmune diseases and think the AF does some awesome things to support the cause. I will also regularly post events held by the AF (like the Advocacy Summit coming up and various walks/benefits) that I think followers will find relevant and important. BUT, I do not support how the Arthritis Foundation lumps together autoimmune diseases in with osteoarthritis under an umbrella term. I also detest how there is no accurate description or portrayal of these devastating autoimmune diseases, and that is why my money will go elsewhere before it goes to the AF. They are lacking big time in accurate awareness and it’s a problem.
Yes and no. Technically I’m allowed to have a moderate amount of alcohol (specifically I was told to stick to vodka and only vodka), but 9/10 times I choose not to. My liver enzymes are already elevated due to inflammation— why anger my inflamed liver more? Drinking also exacerbates my flare/symptoms and the extra pain and nausea is never worth the buzz.
Dr. Incompetent, Mysterious Abscesses, and a Lack of Logic
The amount of incompetency I’ve encountered in the past two weeks is truly beyond words.
Most of you know that I just wrapped up a week long visit to the Mayo Clinic, that was both enlightening and incredibly frustrating and left me in quite a bit of turmoil. I called both the rheumatologist I saw, Dr. W, and Dr. A (A for asshole as you lovely followers have so dubbed him!), the gastroenterologist, on Monday to get the results of my labs repeated the week before.
Amazing response to these bracelets. I am bed bound for the fourth day in a row, but am passing the time by writing each of you that purchased a bracelet a handwritten thank you note.
Proceeds go to the creation of a scholarship fund for chronically ill students (graduate and undergraduate) and to Autoimmune Arthritis research through the ANRF (Lupus, Rheumatoid Arthritis, AS, etc), so please consider making a donation via the side bar or ordering a bracelet.
Most of you probably aren’t aware of this, but I have a leap year birthday. I was born on February 29th— a day that only exists once every four years. Meaning that come February 29th, 2012, I will be turning five years old.
I have defied all medical statistics and odds since childhood— a constant anomaly. In recent years, friends, family, lab techs, doctors—you name it— have all decided that my medical odds are the way they are because I was born on such a rare day.
It is an odd concept if you think about it. I am always in that “less than 10% of people experience___” category. I have had religious figures tell me that the birthday and the path my life has followed is symbolic and for the greater good, so to speak. I am not particularly religious, but it is an interesting thought. My birthday screws up blood banks whenever I go to/am forced to donate, it confuses cops when they run my license (good or bad? Have yet to figure this one out…), it has caused computer malfunctions in offices and labs all over the place. Hearing that I’ll never have to worry about my age is always a good laugh, too.
In the past, I’ve always done something ‘big’ on my real birthdays— a small trip, a party, something to celebrate the actual day. So here I am. Sitting in bed doped up on medication and my birthday is 10 days away. I have no plans and no energy to create plans, let alone follow through with them. Friends keep asking what I’m doing and I just don’t have any answers. How can I commit to have people over or go somewhere when how I’m feeling has been changing so drastically by the hour lately? That and even the thought of how exhausting throwing a party would be is exhausting in itself.
I really wanted to go to New Orleans for my birthday weekend (not far from Tallahassee): get a little crazy, drink a little too much, enjoy the culture of a new place and cross it off the bucket list. I have been itching for a real vacation (a clearly much needed one), but I don’t have the time nor the financial means to do anything of the sort. It’s been a long while since I’ve been able to let go and have fun. To be honest, I don’t remember the last time I did. Writing that made me a bit sad, to realize I can’t remember the last time I had some serious fun. I remember the last few times I’ve tried to do something “normally fun,” but each little expedition just ended before it really began with tears and pain medication.
Sara over at GirlwithGuts recently wrote about similar birthday blues and I fully support her conclusion that no matter what kind of a day my birthday falls on— good or bad— there will be cake. Cake and no tears. No pity party here.
What’s your favourite way to spend a big birthday while in a severe flare? Share your thoughts below via Disqus comment box!
Particularly relevant article to those of us with Rheumatoid Arthritis.
Author of How to Be Sick (one of my favourite books which I will be reviewing shortly), Toni Bernhard examines Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue Syndrome, and Restless Leg Syndrome and the phenomenon of poorly labeled medical conditions.
"For example, people with Rheumatoid Arthritis are frequently put into the same category as those with Osteoarthritis—a common condition usually associated with aging […] But Rheumatoid Arthritis is a systemic autoimmune disease. Joint pain and stiffness is just one of its many symptoms. The suffering of those with RA is often trivialized because they’re lumped together with those who have arthritis. People with RA are told it’s no big deal, and often have to put up with insensitive comments, such as "You’re too young to have aching joints."
Puppy Appreciation Post: There are few things that calm me or make me feel better when my pain exceeds the point of toleration. My dog sensing my pain and distracting me is one of them.
Meet Baylee. We rescued her when I was 13 and fell in love with those sad brown eyes. Right now, she is seven hours away south of Tallahassee and the distance is driving me mad. When I moved back home on medical leave last March from university and began treatment, Baylee spent every minute by my side. It’s so strange (and wonderful) how animals can sense suffering and pain. Her head is always on my shoulder when I’m at my breaking point and am home. Which is why this semester has been so emotionally difficult for me. Nights are hard sometimes. When my pain levels peak and I lay motionless in agony, unable to do anything at all but succumb to the anxiety, fear, pain, and helplessness, I cannot begin to express my longing to have her there. Tonight is one of those nights, so since I can’t have her by my side, I figured I would share my little piece of happiness with you. Her presence always made these nights much more bearable and sleep much easier to come by. She is always an immediate reason to smile, a set of ears to listen, and a comfort.
It has been such a profound emptiness for me since moving back that I have been considering bringing her up here (she is small, trained, and would be fine in an apartment) or adopting an older already trained dog from a shelter. I have looked into service dogs for people with chronic pain and illnesses that pose physical problems like mine do, but the dogs and training are thousands of dollars and require serious fundraising— something I am not sure I am comfortable with or comfortable asking friends/family/strangers for money for my own benefit.
Animals can give people a purpose. Having a responsibility, like taking the dog for regular walks, encourages me to get that little bit of fresh air and exercise, to get up out of bed and the apartment, not to mention combat the isolation and depressive funk I have been fighting off lately. No decisions have been made; a dog is a huge financial responsibility for a disabled college student who is unable to work, but I will keep you updated.
Any dog can be a therapy dog. Just wanted to share a piece of my happiness with you.
Do you find your animal(s) can sense when you’re struggling? How many of you use or are considering a service dog to help you with day to day tasks?
Today was an absolutely awful day, full of incompetent doctors (wait until you hear about this one. He trumped all of the ones previously mentioned), horrible weather, and excruciating pain while running on quite literally no sleep, but I cannot tell you how amazing it is to read messages telling me how that last post resonated with so many of you, and how many of you took something away from it.
Coming home to such great responses definitely brightened up a dreary day, along with:
Chronic Curve made the Wego Health February Newsletter
I have a tiny amount of chocolate hearts that I am going to enjoy so long as my stomach permits.
Envelopes for the first shipment of Rheum Awareness bracelets are addressed and ready to be stuffed and sent tomorrow, thanks to the help of a good friend.
For those of you that use twitter, I post/retweet a ton of great advocacy/activism opportunities on there and facebook. Both are usually updated faster than this blog and occasionally I give sneak peeks into upcoming projects and posts, so like/follow & share!
There are not enough words to thank you for your "Love yourself More" challenge. I just spent a week in the ICU after a suicide attempt and I really need *something* to help me come to terms with the pain and disability that led me to feel so much despair. I am so grateful I found your blog, you have changed my life for the better. THANK YOU. <3
You are not alone. You’re never alone and my ask box is always open. There are so many of us going through the same emotional turmoil that comes with pain and chronic illness—myself included— and I promise you there are ways to love your life and yourself more than you hate the pain. It takes trial and error, time, and hard work, but it is possible. I am beyond elated (there are no words to adequately describe how much so) and relieved(!!) that this post helped you in such a profound way, and I am so proud of you for taking the challenge. Let me kow how you’re doing with the challenge and if I can help you along the way. I didn’t change your life; you did by deciding to make a change. You should be so proud of yourself. A few resources I’ve found helpful in dark times:
http://emotionalbagcheck.com — the site is down for maintenance, but check this out when you’re feeling desperate and need to speak to someone.
Project Toe— text or call when you feel like harming yourself and they will talk you through the emotions and get you through it.
Suicide hotline US & UK come up if you google them. Please, reach out to someone. An inbox, a forum (there are tons to choose from if you go to my weekly link roundup page), or one of these awesome resources, but please reach out.
I don’t care much about Valentine’s day. It makes no difference to me whether or not I’m in a relationship with another person when the 14th rolls around because no matter who I am with, where I am, what day it is, or what I’m doing, the most important relationship I have is with myself.
It took an indescribable amount of loss and heartbreak for me to learn this. Learning it the hard way, I did, but it was one of those life lessons I will forever hold onto.
But how do you “love” yourself when your body is so debilitated? How can you love yourself when part of you refuses to function and keeps you in constant pain? How can you love yourself when you do not necessarily love your life, your circumstances, or your surroundings?
Small, simple steps. I write frequently about how changing your conscious thinking patterns is a key towards a productive and/or positive attitude. The same holds true for self love. Fake it until it’s real. Keep in mind that self esteem and self love are intertwined.
A therapist I once saw gave me cards with little sayings on them. Specifically, one of them said “I am beautiful.” My job was to stand in front of the mirror for three minutes, morning and night, and repeat the saying out loud to myself over and over. Eye contact included. For someone who had just gotten out of a self-esteem degrading relationship, this seemed to be an impossible task. I saw deep dark circles under my eyes regardless of any sleep I got, thinning and darkening hair that I detested, I saw pain in my face. Beautiful was nowhere to be seen in the reflection. I faked it. Some days, I still fake it! But I always do it.
Now, nine times out of ten, I no longer fake it. It is true, honest, self love. My body is sick, but my heart is healthy. My body is mangled, but my spirit is alive and well. Sure, those dark circles are still there. Not only is my hair still thin, but I have bald spots now that I work to hide. I have new red rashes that burn when irritated, but there is more in the mirror than my illness; there is more in my life than my illness, and what lies behind it is beautiful.
After a year of regularly taking these small steps, I have never been happier with who I am. Despite my body and diseases, I have confidence in myself that I have never had before.
Compassion. What would you say to a friend in your position? What would you offer to a friend? Care, kindness, friendship, love, patience, compassion. You would not scold them with criticizing words or doubtful commentary in response to discussion of their pain and suffering (pro-tip: you shouldn’t), so why would you do the same to yourself? I have and often do catch myself heading down the “You’re crazy, stop exaggerating, stop talking, if you would just…” road. When you catch yourself criticizing yourself and/or your body, pause. Stop the thought in its tracks, and ask yourself if you would treat a friend or loved one the way you’re treating yourself. Then decide how you would respond to a friend, and respond that same way to yourself. Respond to your pain, suffering, body, mind with compassion; the same compassion you show to others. For me, this means speaking out loud to myself "STOP. You do not deserve pain nor is it your fault, now allow yourself to take medication— you wouldn’t allow [insert a friend’s name] to suffer." And then I go about what I was doing before, but I do not allow the counterproductive thought process to continue.
Redefine Your Life: What does that mean? When the words “productivity” and “success” come to mind, do you think about how you existed prior to illness? Productivity for me once meant classes from 9-5:30 pm including a lab, finding dinner, and studying for hours at a time until bed. Success meant finishing three days worth of homework in one day and acing multiple exams in a short period of time. Success meant a mile or two at the gym. Now, “productivity” means taking a shower or cooking a real meal. Now, “success” means getting onto campus and to class on time, or being able to get to the pharmacy on a bad day. You will never feel productive if you consider things productive by the old definition; you may not be able to meet those previous expectations and thus a pattern of beating yourself up/feeling bad about not being “productive” and “successful” develops. Redefine these words and words like them to fit your new lifestyle, however permanent or temporary it may be, and recognize your productivity and success as it comes.
Physical appearance. Again, something that a chronic disease can alter drastically. Since being diagnosed myself, I have gone through periods of weight loss and weight gain, none of which I have much control over when medications are the cause. My skin, hair, nails, and walk have all changed. For those of you on steroids (I am almost grateful for my Prednisone allergy), moon face and excessive weight gain/acne are huge obstacles to face. When you feel like you look awful, when it’s a struggle to get your hair washed (let alone styled), when you live in your pj boxers like I do, it’s hard to love your appearance. Recently I’ve been trying to keep my self esteem higher by doing little things to make me feel better physically and so far it’s working.
Examples? I started using sulfate-free organic shampoo, specifically this one (click for review). Let me preface this by saying that I am cheap! I was not raised to be a big spender and the thought of a $10+ shampoo once seemed absurd, but since my hair changed, I took the plunge. Since starting the organic shampoo experiment, my hair is almost back to the way it was prior to this autoimmune insanity. Though it is still thin, eliminating sulfates and harsh ingredients has made my hair healthier and it breaks less. The added volume from the shampoo helps me hide the bald spot I recent discovered and the naturally limp state my hair is in. It still falls out, but if you can eliminate the hair loss from unhealthy hair vs. the hair loss from the disease, you’ll notice a big change. I also use a protein packed conditioner by Joico. I just got this yesterday and will review it shortly, but have heard amazing things about it and did my research before the purchase (it’s expensive).
Little things like an easy to apply lipstick even if you’re just going to the pharmacy or around the house, keeping your nails painted (I have now incorporated regular mani/pedis into my routine as it is something fun to do and is a great pick-me-up on a bad/emotional day) finding a good foundation and skin care regimen like this one to combat the acne go a long way to keeping your confidence from hitting the floor and it’s an easy way to give yourself a little lovin’. A full make up routine is often exhausting, but I’ve found a few products that are easy to apply and go a long way to making me look and therefore feel less “sick-looking.”
Reward yourself for a hard day, for even the smallest of accomplishments. Create a reward system. Do you have a painful injection every week? Come up with a reward for after you complete them, whether it’s something like a handful of peanut butter M&Ms (my fave) or your favourite little treat that you normally would not indulge in, or something larger, reward yourself for the small triumphs and accomplishments. Did you make it to the grocery store and cross all your errands off the list? Did you manage to shower and style your hair this morning? Did you ace an exam you struggled studying for? Pat yourself on the back, recognize your strength and perseverance, and reward yourself. You deserve it.
Just because. Treat yourself to something that makes you happy just because. Example? I buy myself fresh flowers from the local grocery store every week. They’re not expensive— a small bunch is $4.00— and it’s just something to brighten up the space where I spend the most down time. I firmly support the occasional retail therapy, but isn’t that a given? It’s not easy to do things when you are depressed and in pain, but putting that little bit of effort can and does help.
The Ten Minute Challenge. Feeling overwhelmed? Sad? Anxious? Disgusted? D. All of the above? Take a ten minute challenge. Make some tea or hot chocolate, do some deep breathing exercises or repeat some meditative mantras, and spend ten minutes doing something that you enjoy as a distraction: blog, watch ten minutes of a tv show, read a chapter in your current book, listen to some music, take a walk up and down the sidewalk if you can manage it, sit outside on your patio and just enjoy the fresh air, something, but make it a ten minute challenge.
Project10. I started this project my senior year of high school. Though I haven’t been keeping up with the website (which I hope to restore soon), I still do the project and have a following of people who do it to! Keep a list of positive things about your day, every day. You can do it all at night when the day comes to a close, or keep it going throughout your day, but the goal is to get to or exceed 10 positive things. Why do this? It trains you to look for and focus on the positive rather than the negative; what you accomplished rather than what you did not get done; what you enjoyed rather than what you didn’t. When you have one of those days where putting down anything on the list is just not happening, go back and read through your Project10 journal (online or otherwise) and remember why you keep fighting. Making a conscious effort to remain hopeful and positive goes a long way towards a positive self concept and self love.
Get Involved! Disease can take away purpose. I can no longer work, classes are hard to keep up with and I can no longer complete my pre-med requirements/labs. My social life is very limited. Sitting in bed is not my idea of a good time and I began feeling completely and utterly useless. I had no motivation, no purpose, no outlet. So I got involved, hence Chronic Curve. It gave me a purpose, something to work on and for, something to be a part of, people to work with, and doing something good with unfortunate circumstances has completely obliterated that seemingly everlasting feeling of uselessness. Giving to others goes hand in hand with being involved, and both can create a passion within you that you may not have previously had prior to becoming sick!
Start a blog, write a book, make a twitter and connect with others in the same position, start an online advocacy group or join and online group: sites like Health Central, Wego Health, and Fight Like a Girl are usually looking for writers, members, and contributors.
Participate in online projects: Sara over at A Girl With Guts has posted some great IBD-related challenges this V-DAY (and some great IBD/dating-related posts) and is one of those rare bloggers who strive to get their readers involved. Rheumatoid Arthritis Guy is working with a lovely group of people to create an awareness poster, Show Your Hands — send them a photo of your hands if you have an Autoimmune Arthritis (this includes all types of AA, including AS). For those of you with CFS/ME, there’s a great project accepting submissions right now, Interior of the Mind, run by a college-age Fine Arts major and fellow CFS/ME patient working to raise awareness. Work to spread some awareness on Facebook, or join a completely unrelated cause! If you like to read, consider making a Good Reads account (you can add me on Good Reads here). I can no longer read voraciously like I did prior to the brain fog, but this helps me keep track of what I want to read and find books that sound interesting, plus it keeps track of what I’ve already read and I can spend hours going through novel lists! There are things you can do from the comfort of your bed and you can be a part of something meaningful.
"If Valentine’s Day is the only time you treat your _____ like a queen, you’re doing it wrong"
Have you seen this floating around facebook and tumblr? It’s true. If February 14th is the only day you’re treating yourself to some attention, affection, and love, you’re doing it wrong. Maintaining a relationship with yourself is key to maintaining relationships with others, including your immune system (which I have always though of as a third party in relationships). So here is my challenge to you: make Valentine’s Day 2012 your self love anniversary. Start this tomorrow, those “I am beautiful” practices in front of the mirror. Print out these Love Yourself More images and use them in place of the I Am Beautiful idea if you feel more comfortable with that. Why "Love Yourself More"? Love yourself more than you hate your pain and disease. Go out and buy yourself a book or some flowers and try a Ten Minute Challenge. Do something reading up on deep breathing techniques and what mantras have to do with chronic illness (upcoming post on this so stay tuned!). Start today. A year from now, celebrate the anniversary of your relationship with yourself. It’s amazing what you can do in a years time.
Don’t be fooled, learning to love yourself is not easy. There is no pill to treat the emotional impact of chronic disease and chronic pain, so it is up to you to decide whether or not you’re going to treat it. How many of you actually feel like doing something when you’re at your lowest point? It’s not easy to find the motivation or energy to love yourself, but once you start and once you move past that “I’m faking this crap” phase, I promise it does make a difference and is one of the greatest ways to distinguish an identity separate from your illness.
"It is our choices that show what we truly are, far more than our abilities."— JK Rowling. Today, choose to love yourself more.
*I’d love to hear from you that decide to take this challenge, so keep me updated and let me know how it goes and if I can help in any way
Thank you so much for sharing your experiences and inspirations. I am coming to terms with my chronic illness, which, while very different from the difficulties you face, have made college extremely difficult for me. You are such a powerful writer and I think your blog is fantastic. I hope you have a great day!
Thank you for reading them! And taking the time to send a message! Sorry to hear college has been such a challenge— I know how that is all too well. Thank you! I did have a pretty good day despite a rocky start— same to you!
Last night I lost a lot of hair after running my hands through the left side of my head. It just comes right out with a weird noise and falls down the side of my bed. It comes out in little balls/knots in the shower. I have to empty my brush after a few strokes. Thus far, it hasn’t been visibly noticeable and has been a slow process. First I noticed it was thinning, then I noticed I was losing more hair than “normal.” I have weird hairs sticking up off the top of my head if I put my hair back, but otherwise you can’t tell.
I just found a bald spot. Lifted up my sidebangs and there it was. About a half dollar size and noticeable. Not one that can be hidden unless my bangs are behind my ear. I have no idea yet how it will look when my hair is done (my hair hasn’t been washed in three days and it’s pulled up).
I sat down on my bed and was torn between laughing or crying. I didn’t anticipate it making me so emotional. First thoughts were along the line of “I need a drink and a vacation.” Current thoughts: “Go enjoy some retail therapy and do something for yourself to pick your mood up.” So that is what I’m going to try to do. Not going to sit, sulk, and have a pity party. Instead I am going to treat myself to some much deserved self love.
About two weeks ago I wrote a post called Add That to the List, which detailed my thoughts and reaction to some extremely insensitive comments from a close friend. What list am I referring to? The list of things ot to say to someone with a chronic, progressive, incurable, debilitating disease. Round two: detailing my thoughts and reaction to an extremely insensitive comment from, of all people, my mother (who is usually one of my biggest supporters). I like to think that I will not have to create a Part III post, but for most of us chronically ill individuals, the list is never ending.
"It could be worse. You’re not dying."
Why this is a problem: I had spent a week in a hospital undergoing tests, being poked and prodded, in and out of hospital revealing hospital garb, taking in loads of information and putting my body through extreme stress. I finally broke down after a ridiculous phone call with a horrible doctor. Though you meant well, I hope I never hear this from you again. You’re right. There are people with worse circumstances. There are also many people with better circumstances. Neither of those two facts makes my constant suffering any less painful. I do not spend my days wallowing or unhappy, but there are days where I am depressed. That is normal and instead of bottling those emotions up, I let myself have a bad day or moment and move on. Minimizing my battle with this progressive and incurable disease does not make it go away nor does it help me through an emotionally or physically awful day. It does the exact opposite. It also infuriates me that like my peers and most of this country, my disease is not taken seriously. Chronic conditions are not taken seriously or advocated for. It starts with stupid remarks like this.
Side note: there are worse things than dying. I personally believe that suffering for an entire lifetime is one of those things.
If you are the parent, sibling, loved one, friend, peer, of someone who is chronically ill or in a similar situation as myself, pleasedo not use this remark. If you are my parent, sibling, loved one, friend, or peer, please do not ever say this to me. Minimizing someone’s pain that you yourself have never experienced will not help them or heal their hurt; it will add to their emotional pain. Do not make judgments or suggest that dying is worse than a life with a disabling and incurable disease, one that causes constant suffering. Being sick does not mean that you are a miserable person, but it is normal and expected to have rough patches and go through periods of depression. You have no true concept of their turmoil and are in no position to judge whose pain is worse or what circumstances are worse if you have no concept of their physical struggle. Please remember that and respect your loved one.
According tothis ABC News report, a critical shortage of the “children’s Cancer drug” Methotrexate is apparent. Though ABC news mentions the 3,000+ children with cancer that need this drug, they fail to mention the 300,000+ children with autoimmune arthritis (RA, Lupus, etc) that may or may not rely on the drug, not to mention the thousands of adults that do so as well.
Once again, Autoimmune Arthritis is not even on the radar. So send ABC news a message or comment letting them know that this shortage will affect the lives of many more individuals than they are reporting.
This is much more than an “oncology crisis.”
EDIT: The NY Times has also issued this relevant news report, but again, they missed the fact that there are thousands that use this drug for Autoimmune diseases. Thousands more than Leukemia patients. Neither of which should have to suffer. Write them a comment or complaint and let them know why this is more than an oncology crisis.
EDIT: I somehow missed that they noted Rheumatoid Arthritis in the article. Complete fail, but Rheumatoid Arthritis is just one of many autoimmune arthritis conditions…
So glad you're happy with how the appt. went! Sounds like it was pretty rough though. Rest up so you can get back to writing and keeping all of our spirits up. We couldn't do it without you! Lots of love, Emily! xx
Thank you! You are just too sweet! It was definitely rough, but so productive and worth it, at least with the rheumatologist anyway. I will be resting for days!
Full Mayo Clinic update for friends/family/followers that have asked me to go over everything. It’s an exhausting task trying to explain so much information and events to everyone individually, so I am doing it here! Warning: this is long.
exhausted and very sick. Mayo Clinic has been a great decision overall, but an incredible physical challenge
and we had one hell of a doctor screw up/mess. The kind messages are overwhelmingly amazing and I promise to get back to everyone when I am feeling a bit better. Will hopefully post a full update tomorrow (have been updating via twitter and facebook), typing is difficult for the time being.
Hope everyone is having a relatively pain-free week!
If someone buys an RA bracelet, do you see who they are or is it anonymous? Same goes for Paypal donations
You’re paying with a valid paypal account or credit/debit card, so no, the information is not anonymous (though it is not shared with anyone— I am the only one with access to your information for shipping purposes only) How could I send you a bracelet if I don’t have your name and address?
Mayo appointment with rheumatologist went incredibly well. Have a sensory-neuro condition similar to fibromyalgia (no surprise there) and obviously inflammatory something or other, but it’s time to re-evaluate and figure out what exactly is going on. Talk of genetic conditions and had 26 vials of bloodtaken, some of which will be sent to the NIH in Maryland for those genetic markers. Blood draw turned out to be too much for me to handle and my body immediately went into shut-down mode after it was over. Spent time throwing up in the public restroom and ended up having to cancel the rest of today’s tests and reschedule for tomorrow. Too weak to keep my head up, but again, in good spirits!
In bed at the hotel and will be taking a long longnap. Just and update for those of you asking and for friends/family, and a ginormous thank you to Kris for driving me to Jacksonville and putting up with the craziness. I’m absolutely in awe of how amazing my friends and family are.
A big thank you to www.pixiecd.com for featuring the RA Awareness bracelets!
Note that the Arthritis National Research Foundation has made huge strides in research for all types of Autoimmune Arthritis. Money raised will not just be going to RA research, but to Lupusand other kinds of autoimmune arthritis as well. I also think it’s important to note that finding the key to one type of autoimmune arthritis may very well just unlock the the door other other AI conditions, such as Crohn’s. The scholarship fund will be for students with chronic autoimmune conditions, not exclusive to those with RA.
So even if you don’t have RA, wearing the bracelet is about much more than one disease. Please consider supporting the cause.