It’s been a busy month for all things rheumatic/autoimmune diseases.
For those that haven’t heard, March is Autoimmune Diseases Awareness Month, started by the American Autoimmune Related Diseases Foundation. Click on the link to find an Autoimmune Disease Awareness walk near you or get involved.
With the spotlight on autoimmunity this month, celebrity Nick Cannon has generated some much needed awareness and attention for Lupus and despite his very recent diagnosis, is already working with the Lupus Foundation of America. You can read about his ordeal here or follow his or the LFA’s twitter for quick updates.
A new breakthrough medication that “blindfolds” white blood cells from causing damage seems to be promising for Rheumatoid Arthritis/Rheumatoid Autoimmune Disease patients.
Though most RA/D patients already know the serious increased risk of cardiovascular disease and complications that come with their autoimmune disease, a new study and set of statistics are out: RA/D patientshave a 40% increased risk of atrial fibrillation and a 30% increased risk of stroke. Another reminder of why it is imperative for those of us with autoimmune arthritis to keep our hearts healthy.
Also new on the RA/D front, Airway Abnormalities May Represent Preclinical Rheumatoid Arthritis. Author Bruce Jancin of Rheumatology News reports “increasing evidence [suggesting] that RA is smoldering in the lungs during this preclinical stage, which can last a decade or more.” The article goes on to discuss the role of Methotrexate as a preventative agent and the significance of the findings.
News Rheum Action: Looking for some easy ways to get involved?
Consider taking the Rheumatoid Patient Foundation’s RA/D Survey, which will help the new organization better help patients in the community.
Registration for the very first World Autoimmune Arthritis Day has begun. WAAD will be held on May 20th, 2012 as an international online awareness event. Registering and participating in the event allows you vendor discounts, a chance to submit your story, and much more. Get involved!
I still hate methotrexate.
I feel this.
And I would still almost go back on it because it handled my symptoms so well. Even if the side effects were shit.
But right now I’m looking at CellCept or Benlysta.
This Valentine’s Day, Love Yourself More
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.
- The International Autoimmune Arthritis Movement is always looking for online volunteers! They provide the training and everything
- 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
“Cancer patients use Methotrexate in extremely high doses to send their disease into remission in hopes of saving a life. Autoimmune Arthritis/SLE/autoimmune patients use Methotrexate for years (often over a lifetime and in combination with other drugs) to hopefully stop the progression of their disease and keep symptoms at bay so they can adapt to a new life with a constant disease; remission is a long shot and the statistics are not promising*. Though Autoimmune Arthritis patients take the medication in lower doses, we take it often for years at a time and still experience all of the same side effects: hair loss, nausea, mouth sores, fatigue, the list goes on and on.”
Chronic Curve on popular misconceptions about chronic illness vs terminal illness. Patients with lupus (SLE in this quote; the author has autoimmune arthritis) often take the same medications as cancer patients; although in lower doses, it is often permanent. Moreover, cancer has a possibility of permanent remission; there is no such thing for lupus. I will likely take all the same medications as a cancer patient during my life, but I will never get to quit taking them and be ‘cured.’ Am I still a survivor? (via karenfelloutofbedagain)
I’ve been on methotrexate. Chemo. It’s hard to explain to people why when they don’t understand what “autoimmune” means.
Let’s Be Real: New Study on Exercise and RA/D Patients Too Black and White?
While reading this article about how a new study finds “too many RA/D patients are inactive,” I had mixed feelings about the findings and conclusions drawn from them.
This study found that 40% of Rheumatoid Arthritis patients are inactive. Of the 176 patients they included in the study, 42% did not participate in moderate-to-vigorous physical activity offered in the experiment.
- Do I agree that maintaining mobility is important? Yes.
- Do I agree that exercise is important considering the serious increased risk of cardiovascular symptoms that occur in RA/D patients? Yes!
- Do I think it is physically possible for all RA/D patients to exercise? Absolutely not.
10 minutes of exercise would equate to a minimum of four days in agony, bedridden for me personally. I struggle to walk; how could I possible run, jump or speedwalk? Not all RA/D patients have their disease under control! In fact, most of us don’t and are nowhere close to remission. My doctor told me not to exercise for the time being other than simple stretches and range of motion exercises.
Once again, the assumption that this disease only affects the main joints comes into play and writers of this article forget to take into consideration that perhaps some patients have costochondritis that makes it hard to breathe? Or enlarged spleens? Or pleurisy? Or… do you see the problem here?
- So what were the reasons cited for these participants refusing this exercise? Lack of motivation nd a belief that exercise had no benefit to them.
Really? Lack of motivation…do you know what I would do to be able to go to the gym?! We are not all lazy. There is a difference between lazy and unmotivated and sick and physically disabled. Obviously many patients are going to consider exercise to lack benefits! For many of us, it will make things worse, not better. How is that benefiting us? A week of bedrest does not always outweigh the long-term benefits; how many of you can afford to be bedridden (more so than you may already be) for a week because you simply exercised?
One physician and assistant professor of medicine stated that “although we generally consider joint pain and damage as the reason that RA patients may not exercise, this does not appear to be the primary driver of lack of exercise in the group studied.”
- Hate to break it to you, Doc, but your 176 patients do not represent the whole 1+ million Americans with this disease.
- Did you examine this “lack of motivation” in detail? Did you inquire as to why there would be no benefit to vigorous/moderate exercise? No.
Finally, “expert” Rheumatologist Dr. Waseem Mir brings up the most important aspect of this study: “part of the problem is that many patients don’t really have their arthritis under control.”
- He called it “arthritis.” This is not “arthritis.”
- How do physicians expect patients to exercise like healthy individuals when their disease(s) are out of control? Further proof that treatments are truly limited and a cure is desperately needed.
What are your thoughts on exercise and your Rheumatoid Arthritis/Rheumatoid Autoimmune Disease (or any Autoimmune Arthritis— Lupus, PSA, etc)? What kind of range of motion exercises do you do? What kind of physical activity makes your symptoms worse? Share your thoughts below!