Posts Tagged Auto Immune Disease
First off, my apologies for being off the radar for, well, months.
My work has been busy and I’ve been trying to finish up my second novel. (If anyone has any interest in checking out my first book, you can find it here.)
It’s left me with little motivation to write this blog after busy days that include a lot of time in front of the computer. In fact, I’ve spent many nights these past few months just being exhausted and having a great relationship with Netflix.
On to the good stuff.
I was recently at a dinner and found out through that a person close to me might have Lyme Disease. I was listening to her symptoms – sore joints, fatigue, depression – and told her I understand how a lot of these symptoms feel and that she should call me if I want to talk.
To which she responded, “But you’re better, right?”
She’s not the first person I’ve heard this from. I’ve heard it from friends and family, those who should really understand chronic disease better. And I get it. They see me and I look healthy — I go to work, get exercise, write, travel. I don’t complain like I used to before I had a diagnosis.
I’m better, right?
Well, not exactly. “Better” suggests “cured” and I think that’s how most people mean it. But in the world of chronic disease and Rheumatoid Arthritis, cured is not really part of our reality (Yet! So much exciting medical research is happening right now!).
So how can you balance educating people, but not causing those close to you worry -OR- come off as complaining?
Honestly, I’m not sure.
I responded by saying that my drug therapy allows me to manage my disease and I feel much, much better than I did before treatment. This is the truth. I balance pain, fatigue, new limits, and, yes, even depression from time to time. I tweak my drug regimen constantly to take the least amount of drugs possible while managing my pain. I take two heavy-duty drugs weekly just to keep a semi-normal life and I get blood panels regularly to make sure my liver’s keeping up.
I don’t feel cured, but I do feel better.
So, what about you? How do you handle the “Aren’t you better yet?” line?
I finally met someone who also has RA. She’s the new pharmacist at my pharmacy. She asked me how I like my methotrexate. I didn’t really know how to answer. “Like” seems like a strong, simple word when talking about any drug with side effects. I would like it more if it was obviously doing its job, but I think most my progress is from the Enbrel.
She told me how she’d had a terrible time on MTX. She had done monthly injections (infusions?) and had many of the side effects that are associated with chemo, including losing her hair. She’s now been switched to two other drugs and taken off the MTX and prednisone.
As nice as it was to meet someone with RA, the encounter left me a bit shaken. Her wrists and hands definitely show the signs of RA. And she hasn’t found a drug regimen that works for her yet, meaning it’s still getting worse.
It’s so important to remember that you are on your own journey. Her experience isn’t mine and doesn’t have to be. It’s so easy to get caught up in the horror stories. To see the disease path as inevitable. But it’s not. It’s really and truly not. If you’ve just been diagnosed, know that there are more drug options, more knowledge on the disease and more medical breakthroughs and research happening than ever before. We have a ways to go until we understand RA or have a cure, but it’s an exciting time in medicine.
Seriously, before you read another blog post or go to another support group, take a deep breath and remind yourself that you ARE a beautiful and unique snowflake (or at least your RA is ;).)
I have to admit, it’s been a rough couple weeks. Stress in my personal life and friends’ lives, as well as some important projects at work and working out a bit too hard, has taken its toll on my body.
Symptoms that I left behind months ago seem to be rearing their ugly heads. The bottom of my feet ache and swell to the point that no shoes make them happy. My feet hurt even doing small things, like pushing down the gas pedal. I feel very, very fortunate that this doesn’t prevent me from running and working out. For whatever reason, I lace on the tennis shoes and feel OK for that hour or so. It’s worth it physically and mentally, even if I might pay a little afterward.
My left wrist has visible nodules that seem to be getting worse, not better. Just the fact that I can see the effect on RA can send me into a mental tailspin. So I’ve been trying very hard to replace negative thoughts with positive, neutral or grateful ones.
Me: Oh my god, look at my wrist. Pretty soon RA will take over my body and I’ll be totally deformed.
My reply to myself (no, I’m not schizophrenic): Just because you have a couple Rheumatoid Nodules doesn’t mean your RA is worse. They’re not hurting you, they’re barely noticeable and they won’t be there forever.
Me: Shut up and let me wallow.
OK, so clearly I have a little work to do.
In my attempt to change my thought patterns and gain perspective, I’ve ordered two books off Amazon. I’ll post reviews here when I’m done.
- A Resilient Life: Learning to thrive, not just survive with rheumatoid arthritis by Kat Elton
Too often, people faced with a disease such as rheumatoid arthritis hear words like, “disabling,” “progressive,” or “tragic.” “Tragic” may be what people are saying but the real tragedy is that these often repeated words do nothing but harm to those who hear them. They completely ignore a very real truth: physical issues can absolutely lead to positive transformation, action, challenge, inner strength, deep courage, and compassion. This unique book is written by someone who knows her subject well. Kat Elton, an occupational therapist and woman who’s had rheumatoid arthritis since age two, knows that people with RA don’t need false hope or to be told what to do. What they do need is to be led toward believing in themselves and improving their reality no matter what it is. Part practical guide, part workbook, part memoir, this book demonstrates that although there is no magic bullet or cure for rheumatoid arthritis, there is a way to live well with this disease.
- The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed by M.E.A. McNeil
Rheumatoid arthritis (RA), a disease characterized by inflammation of the joints, is one of the most disabling forms of arthritis and affects over two million people in the United States. Without proper treatment it can lead to long-term joint damage, chronic pain, loss of function, and disability. From the first moment of her diagnosis, author M.E.A. McNeil took charge and educated herself on every aspect of her condition. Now, as a “patient-expert,” she guides those newly diagnosed step-by-step through their first year with RA. McNeil provides crucial information about the nature of the disease, treatment options, diet, exercise, social concerns, emotional issues, networking with others, and much more. The First Year—Rheumatoid Arthritis is an essential resource for everyone who wants to be an informed, active participant in the management of their condition.
There’s something about having a relatively unknown and widely misunderstood disease that is very lonely. It’s not that I don’t have supportive people in my life, I do. I count myself blessed to have caring friends and family, a talented team including my rheumatologist, naturopath and therapist, yoga instructors and personal trainers. I am a lucky girl.
But here’s what I don’t have: anyone in my life who has RA or truly understands what I’m going through.
In an effort to not feel quite so alone in this, I have a strong desire to connect with people like myself. People struggling with, living with, and surviving RA.
The strange thing is, I’ve reached out to people with RA in my city. A fellow patient of my rheumatologist who told the doc that she was willing and eager to talk to me (she has not returned my calls), a high school friend of one of my close girlfriends who’s had RA since she was in high school (despite accepting my friendship on Facebook, she’s not responded to any of my RA-related messages), and a woman my age who worked with my sister and was full of advice and thoughts and support (to my sister that is, she has not returned my emails). What is it about RA that makes people shut up and shut down?
I’ve been so befuddled by these ignored calls, messages and emails. Don’t other people with RA want to connect with other sufferers, share stories and support one another? Am I really the only one who yearns for this?
This is the void that blogging fills for me. Yes, I likely won’t meet any of you in person, but reading your blogs and shared stories and getting your comments is a true blessing. It assures me that I’m not alone in this.
So for that, whoever is reading this, thank you from a RAD blogger.
I thought you all were more than due for an explanation as to why I prefer Rheumatoid Autoimmune Disease to Rheumatoid Arthritis. Everyone with RA can empathize with that awkward moment when you first tell people about your disease. The reactions for me generally vary from “You’re too young to have arthritis.” to “Arthritis isn’t that big of a deal.” to “What’s that?”.
Even the people that are sensitive to the disease or maybe have even heard of it have misconceptions. They don’t know that the disease is systemic, as in effecting more than just the joints. If they do have a concept of RA, they usually immediately jump to the images they’ve seen of deformed hands. “You have that!? But you look fine.”
I don’t need everyone to understand my disease. And I don’t need their sympathy. But I’m a 29-year-old woman and I hate the stigma of the word ‘arthritis.’ Maybe it’s superficial and hyper-sensitive of me. Maybe it’s because I’m still fresh to the world of RA. Whatever it is, I much prefer Rheumatoid Autoimmune Disease.
You say Rheumatoid Arthritis, and people’s minds turn off. “Arthritis. I know what that is. My grandma has it.” You say Rheumatoid Autoimmune Disease and people just might hear you out and take you more seriously.
Also, I think that RAD just generally encompasses the disease that I am experiencing better. It’s not just the joints. On many bad days, the joints are the least of my concerns. It’s the fatigue and insomnia and even GI problems. It’s the full systemic issues of RA that make it so complex and difficult to deal with.
So there you go. I know they’re just words and, ask anyone, I normally hate arguing semantics, but this one has pushed a button.
Oh, and RAD just reminds me of neon and the ’80s, and that makes me smile. What disease name can do that?
I really liked this doctor-written letter: http://distractible.org/?p=3912 Follow the link to see it on Dr. Rob’s blog, or read below.
A Letter to Patients With Chronic Disease
by ROB on JULY 14, 2010
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.
So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
- Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
- Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
- Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
- Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
- Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
- Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
- Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
After being diagnosed with RA, I immediately did a TON of research online. A reoccurring theme was nutrition and diet. I don’t want to tell people to try to fix everything with diet – I’m on methotrexate and Enbrel myself right now – but I do think it’s an important component for feeling better.
Based on research, blogs, books, webmd, magazine articles, conversations with a friend who is a nutritionist and a friend who has an autoimmune disease herself, I made a few changes.
- No red meat
- Less white meat (chicken, turkey, etc.)
- More omega-3 rich fish (hello salmon!)
- No gluten 😦
- Less caffeine (and I was a serious coffee addict!!)
- More green tea (antioxidants)
- Less dairy (I switched from cow’s milk to almond milk and cut my morning yogurt in favor of fruit)
- More omega-3 foods like avocado
- More nuts and legumes to replace cut protein
- MORE veggies and fruit – lots more
These are by no means the changes everyone should make. A friend with Hoshimoto’s Disease decided to go on the paleo-diet (red meat, nuts, berries, wheat), while another friend with Celiac’s is obviously gluten free.
I’ve had these changes in place for about two months and, overall, along with the drugs, I’m feeling much better! Making these changes has definitely made me more conscious about everything I consume, which is likely a good thing. I’m a single girl with a downtown job – I go out to eat a lot and am not a huge fan of cooking, but this diet has forced me to pay more attention to menus and eat at home more often. I also love to workout and therefore usually am able to maintain a steady weight while eating whatever I want, so being really conscious about eating healthy has been a huge shift.
It has been a lot of fish, salads and smoothies. Here are three of my fave smoothie concoctions so far:
Can’t Beet It
- Unsweetened cocoa
- Almond milk
- Shredded sweetened coconut
- Chia seed (for added omega-3)
- Almond milk
I went to a luncheon/talk today that focused on meditation as a powerful healing tool. The speaker talked about the way meditation can actually force real changes in your brain and body. The concept of neuroplasticity (literally, the idea that brains are more malleable than we had imagined) is growing. For more on this, check out this NPR story.
I have to admit, I don’t do meditation (though maybe I’ll try now…). I find it difficult to sit still and really turn my brain off. I do however do yoga, which I feel like I get a lot of calmness, flexibility and strength out of.
The speaker today shared some “tools” for engaging in a more positive, calm brain state, or, as she put it, a para-sympathetic brain state. I’ll share my two favorite tools:
The first is simple. When you’re worried about the future, as in, Oh my god, what does RA mean for my life? Will I be disabled?, tell yourself, “This is going to be better than you could ever imagine.” Worried about giving a speech? This is going to be better than you could ever imagine. Concerned about an upcoming doctor’s appointment? This is going to be better than you could ever imagine. I think you get the point…
The second tool came from an audience member. He was an older man, and he said that throughout his life, he’d always prided himself on his ability to solve problems. He said he’d recently gone to a counselor with a problem that he was having a lot of trouble solving. He told us that the counselor changed his entire perspective and fixed the problem with some very simple advice: “Approach this not as a problem, but as an adventure.” With that, the man said he could stop worrying about something that couldn’t be “fixed,” and could start focusing on living again.
I think this advice is great. My new mantra: RA is not a problem, it’s an adventure. An adventure that is going to be better than I could ever imagine.
“It really sucks,” I told my mom, fighting back tears.
“I know. It really does,” she replied.
And that is the epitome of what I feel right now. Two days ago, I felt great. I was sure my meds were doing their magic. Today I’m sore, tired, it hurts to walk, my feet are swollen and my stomach is lurching.
So, yeah, it just sucks.
It sucks to be in pain. It sucks not to have control. It sucks to be young with this disease and heading home while all of your friends go to a concert because your feet hurt, you’re tired, and you can’t drink because of the methotrexate.
It sucks to feel sorry for yourself. It sucks to have people feel sorry for you. It sucks to have people not understand. It sucks to never give yourself a break.
I was going to end this post on a light note. To tell you that despite it sucking, it’s not your whole life. That you aren’t your disease and it doesn’t control you. But here’s the thing, I don’t feel like it tonight. I’m tired, I’m achy, I’m lonely, and I want a moment to wallow in self pity.
Tomorrow is a new day, and I’ll be ready with a better outlook and a brighter smile. But tonight, don’t tell me it’s going to be OK. Just take a note from my mom, nod and agree, “Yeah. It really does suck.”
I finally had my appointment with my rheumatologist today after a week of going through potential outcomes. I brought my mom with me to have another pair of ears and the support.
The diagnosis was immediate: “You have rheumatoid arthritis.”
I can’t say it didn’t suck to hear it like that. I’d expected a little bit of mystery, deliberation, maybe a “you’re OK.” But I also can’t say I was surprised. I nodded as he went over the reasons why he was sure – positive for rheumatoid factor and anti CCP, bone erosions, clear inflammation.
Then he asked questions that shed a light on ALL of the symptoms I’d been feeling but hadn’t linked to my “sports injury.” Have I been tired? Down? Depressed? Experienced insomnia? Anxiety? Stomach issues? Yes. Yes. Yes. Yes, yes and yes. Majorly. Dry eyes and mouth? No (something I don’t have, yeah!).
I walked away from the appointment with a diagnosis, a plan and an odd sense of hope and relief. My rheumy believes we can get this into “remission” in six months. My rheumy says I’ll be able to have a family in the future if I choose to. My rheumy says that we’ll minimize permanent damages. That there are a lot of good drug options.
So, of course I left the appointment sad, with a million additional questions and overwhelmed at my new drug plan – A cancer drug? Giving myself injectables? But I was also relieved to be doing something and to have a name to put toward everything I’d been feeling.
I promptly filled my prescription for methotrexate, prednisone and folic acid and started the process for getting insurance approval for Enbrel.
I went to happy hour with my mom and close friend, nervously going over the prescription info and bringing my friend up-to-date.
And then, with a ton of trepidation (Is this severe of a treatment really necessary? What about the side effects? Will it make a difference?), I popped those six itty-bitty MTX pills and began my new life. A new life on drugs, but also a new life on the pathway to some sort of relief and recovery.