Q:Though they're still trying to figure things out, my doctors diagnosed me with an extreme case of chondromalacia, chronic patellofemoral pain syndrome, & patella maltracking. Some days I can barely walk or stand for more than a few minutes. Unfortunately, when I tell people about it, they act like it's not a big deal so I find myself hesitating to call it chronic illness/pain. But now, thx to Tumblr, I'm starting to think that maybe that's just ignorant and insensitive people? What do you think?
Maybe calling it a chronic condition would make you feel more comfortable? Ultimately the label does not matter, clearly it is impacting your daily functioning and regardless of whether it’s a lifelong condition or a temporary condition, it still sucks and you’re entitled to feel that way. I think you’re right, but I’d say it’s not always willful ignorance. Most people just don’t grasp how frustrating or limiting a chronic condition of any kind can be. We can’t necessarily blame them for that, but we can educate them and give people perspective they may not have had prior.
Sorry you’re dealing with this, I really hope you’re able to get some more answers and an effective treatment plan. Best of luck to you, anon!
It’s Rheumatoid Arthritis Awareness Week in the UK!
Again, I really have to commend nras-uk on their awareness materials. So glad to see awareness materials addressing not just fatigue, but the impact of fatigue—on sex, no less!
You can follow NRAS here:
It’s Rheumatoid Arthritis Awareness Week in the UK!
Their awareness materials are fantastic—showcasing patients of all ages and walks of life, and symptoms beyond joint pain. I’ll be posting them daily up until the 22nd.
You can follow NRAS here:
There is a thin line between a “new normal” with active inflammation (I am never entirely pain or symptom-free) and a “big” or “full on flare. For the past few days, I’ve been riiiight on the edge of crossing that line. My fatigue caught up with me in a way it hasn’t in quite some time and my GI symptoms have resurfaced. It’s not uncommon for me to flare when the summer heat (and my stress level) starts to get intense, but I know where this is headed.
So today, I quit.
I quit a commitment I made to a volunteer position a few weeks ago.
It was demanding, ~9-10 hours a week + the studying for the training. It was challenging me and I really believe I would have benefited from sticking it out. But, something had to give.
Learning how to take a step back without feeling inefficient, incapable, incompetent has been an enormous challenge for me. I’m still learning. Last month, I reached out to friends to ask them to take the lead on certain projects. Sent emails to certain mentors/leaders to ask them to support me taking small steps back. It feels inherently wrong—I have spent my life swimming against the current; to suddenly change course mid-swim feels wrong. But the way I grew up was “wrong.” I don’t always have to swim against the current. I don’t have to struggle—there is not always success or strength in the struggle.
I want to give 100% to Medicine X. I want to give 100% to advocacy. I want to give 100% to academics. I want to give some serious effort to my social life and community work. And perhaps most importantly—I need to give my body 100%. I can do these things, but it’s a delicate balancing act.
I did the right thing, made the healthiest decision for my body and mind, and this isn’t “failure” or “incompetence.” It is my new normal, and it’s okay to embrace my new normal instead of fighting it—even when others do not understand the way I delegate my time and energy.
I was able to see a health decline incoming and take proactive steps to (hopefully) prevent that decline from turning into a major downward spiral. That’s a little victory as far as I am concerned.
I am tired. I have been tired.
So I quit. I’m sitting this one out. Letting go. And that’s okay.
I’m wondering, how many of you struggle with finding balance? Do you struggle with saying “no” or taking on too much? How do you overcome this or learn to balance your priorities better?
Q:I've had people with no medical problems suggest that I caused or can stop my autoimmune disease with diet while completely unaware of the fact that I can't eat most foods to begin with. And the people that think the pharmaceutical industry wants to keep me sick. Oh and the people that seem to think that "negativity" can make you sick. Do you have any advice on how to deal with the holistic healing people who think they know more about my body than my Doctors and me?
This is really tough. I get this constantly in person and from people online through my Tumblr inbox, email, and blog comments so I know exactly what you’re up against.
Everyone handles this differently so I can tell you what works for me, but I can’t say it’ll work for you.
For me, it really comes down to who is making the comment. New friends that mean well? Usually I take the opportunity to educate them and then drop the subject. If it comes up again, I make it very clear that while I appreciate their efforts, I am doing absolutely everything in my power to treat my disease(s) and have a highly qualified team of doctors behind me. Sometimes I will say something along the lines of "thank you, I will look into that" and it ends the conversation.
Other times, I’ve called people out. When strangers make comments, I usually ignore them. I can’t tell you how many emails I get about apple cider vinegar and energy healing. It helps that I have radically overhauled my diet and lifestyle and yet, I still have active inflammation/flares. It helps that I can throw that back in the faces of those who cross the line and attempt to invade my boundaries. If someone has really crossed the line with me, I will usually pose a question along the lines of "if this were the cure for my disease, do you not think it would be highly regarded by medical professionals and do you think I would still have this disease?"
So my question to you, anon, is how do you respond already? I don’t personally find that responding with anger ever helps an in-person situation like this de-escalate. My biggest piece of advice is either use the opportunity to spread awareness and educate, or use a one-liner and shut the conversation down/enforce your boundaries.
You know your body best, and how you treat your body and your disease is in your hands. Do whatever you need to do to enforce those boundaries and maintain your wellbeing (without hurting others, of course).
Does anyone else have any suggestions? Leave your comments in the Disqus box below.
Arthritis affects 50 million Americans, 300,000 of them children. Of those 50 million, 9,500 will die from the disease EACH YEAR, one child every week.
I never ask for help. But this is the one time I will. I have had Rheumatoid Arthritis and Sjogren’s Syndrome for 5 years. I started rock climbing less than a year ago, and I knew I had found my passion.
But without a cure, I can’t continue to do the one thing I have come to enjoy in life. I am a team captain in the 2014 Atlanta Walk to Cure Arthritis. My team name is Rocking Our Way to a Cure. Any donation would be so greatly appreciated, even $1 would get us closer to a cure. I would love for anyone who can to join my team as well. My team page is here and my personal page is here. Both accept donations as well as new team members. Thank you so much to all of you who continue to support me in everything I do.
Signal boost! This is absolutely awesome! Please help Jesse and Team Rocking Our Way to a Cure reach their fundraising goal!
Q:Just wanted to share a great story I live on the second floor of an apartment building and my neighbor who I've only met in passing just brought my delivery of biologic meds from the front door to my apt door, not knowing how messed up my knees have been and that that climbing those stairs for my temperature sensitive package was my Mount Everest today. What he did as an afterthought nearly brought tears to my eyes.
This is beautiful! A little act of kindness can change someone’s entire perspective and make someone’s whole day. You deserved it, anon.
Pay it forward!
Q:Are you scared of making mid/long-term plans?
Oh jeez. Talk about a loaded question.
Scared? Yes. Apprehensive? Terrified? Anxious? Yep. Especially when my long-term plans involve making financial commitments or commitments to other people.
But I’m getting to the point where I’m learning not to let my fears and anxieties related to my diseases hold me back. I’ve slowly started taking bigger steps outside of the box that these diseases and chronic pain have put me in. Every step is a little easier to take. And sometimes the steps aren’t easier. Sometimes I just take them anyway. Going into medicine is one of those long-term plans that has me petrified. Here I am, taking the steps anyway.
It took me running myself into the ground socially, emotionally, mentally, and physically to realize that even if I sign on for some serious commitment (e.g., grad school) and have to bail—it will not be the end of the world. I have faith in myself that I’ll find my way, even if it’s the hardest thing I have to do. Even if I’m homeless or hospitalized. I’m learning how to have that faith in myself and my ability to persevere. That’s kind of awesome and terrifying all in the same breath.
When I think about making long term plans in the context of a progressive disease and very limited treatment options? Yeah, it terrifies me. And to be really honest, if I sit and think about whether or not I can handle grad school or marriage or whatever ginormous plans I may want to make in the next decade, I panic a little bit. I know Kineret is slowly becoming ineffective. I know there are only so many treatment options. I know they’ve recommended looking into a stem cell transplant. Those fears are all possibilities. And it’ll be what it’ll be. They’ll either happen or they won’t and they will do so regardless of any plans I make or do not make. So instead I focus my energy on the here and now. Life will pass me by—the same number of days will come and go—whether or not I make plans and live the life I want to live to the best of my abilities.
That doesn’t mean it’s easy (newsflash: it’s not easy), simple, affordable, D all of the above. But eventually you just reach a point where you have to say fuck this, I’m going to try and rebuild a new life for myself. That’s the point I’m at right now. I am doing my best to channel all of my fear into those little baby steps forward.
I hope this was coherent. It’s a long process that doesn’t ever really end; we go through this in stages. And you know what? It’s okay to be petrified to make plans in the face of a chronic disease. It’s normal. My email inbox is always open if you want to talk more.
February 28, 2014 is Rare Disease Day! That’s 36 days from now. Rare disease day is a special day for me. Not only do I have three extremely rare diseases, it’s also my birthday (I was born on leap year…always defying the odds, clearly). I’m hoping to do something special, maybe a fundraiser—but more on that later.
Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment…
The theme for 2014 highlights that the many different facets of rare disease care represents a universal need for patients and their families around the world. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary.
Check out www.rarediseaseday.org to find an event near you (or host your own) and learn how to get involved. I’ll be posting more as the date gets closer. Please reblog and tag your own rare disease communities!