Archive for April, 2012
I threw a bachelorette party for my best friend this Saturday. I wanted things to be absolutely perfect for her. And since I didn’t know many of her friends, I wanted to make sure it was perfect for them as well.
As the weekend approached, I was getting nervous. What if I didn’t have the stamina to make it all night? What if my feet started aching? Would I even have fun, not being able to drink because of the methotrexate?
I’m happy to report it really was better than I could have ever imagined. The night was a blast and everyone had a great time. I struggled a bit at the end, but I partied (sober) with the best of them, finally falling asleep at the hotel room, having girl talk with my best friend about her soon-to-be husband.
I know that I should be aware of my body and respect its limitations, but it felt good to push myself more and (mostly) forget about my disease for awhile.
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 spoke to a friend of mine tonight who is about to undergo surgery for a detached retina. Now, this surgery and the whole circumstance sucks in a million ways. First of all, your vision is at stake. Secondly, you’re essentially bedridden for possibly a month (already she’s had to hold one position on the couch for a week as they tried to have a gas bubble push her eye back into place).
But talking to her tonight, she was so positive it was inspiring. Yes, she is scared to go into surgery and frustrated at her “bad luck” of randomly getting a detached retina, but she’s also strong and optimistic. She said that she was looking at this as a lesson, that maybe she should be less wrapped up in the petty things. That maybe there was a lot she could learn from this experience.
She also caught me off-guard by apologizing for not being more there for me during the last couple months. That having this happen has made her truly realize how hard it is. I didn’t feel like she owes me an apology, but I do understand what she means. I can absolutely empathize with what she’s going through.
This conversation made me take stock of the emotional rollercoaster I’d been through since my diagnosis (and even before!) and how my own priorities had changed. I’d like to say that having a chronic disease means I never sweat the small stuff, but of course that isn’t true. What is true is that I appreciate the little things in a way I don’t know if I have before. The spring flowers coming up. A pain-free downward dog. Stumbling across a really good cupcake that fits my new gluten-free diet (more on that in another post). And it really makes me appreciate the bigger things. Like the days I go for a run. A really good laugh. A truly supportive friend. My family.
It’s not like I never throw myself a pity party (believe me, I can throw a pretty good pity party), but I’d like to say that the strong me outweighs the weak one. And I’d like to think there’s a lessons I’ve learned, and lessons yet to be learned from this whole experience.
Since I was diagnosed with RA, I have been more understanding with myself and my own body. This often means that rather than staying out, or going to get a post-work happy hour, or making social commitments back-to-back like I was so used to doing, I make more time for me to just relax.
I cherish this time to myself to read a book or take a bath or catch up on a TV show that no one else cares to watch (Glee!). This time is beautiful solitude.
But there are times, when having to turn down plans because I’m too tired, or just adding up all that solitude turns into something else. Suddenly, I’m not basking in the self-indulgence of my “me” time, I’m agitated and wishing someone was there with me, or that I was anywhere else.
I came across this article in Psychology Today, 10 Quotations and Reflections on Loneliness, that really rang true for me.
In case you don’t follow the link, here’s one quote to leave you with:
“Solitude is fine but you need someone to tell that solitude is fine.” —Honoré de Balzac
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.
In the last post I said I’d become a stabbing pro. I may have exaggerated a bit, but I will say that it has gotten much easier. It still hurts and it’s still not fun, but I don’t have to give myself a five minute pep talk before injecting myself anymore. I don’t have to countdown from 10, just to start the countdown again (it only takes the one countdown). I just take a deep breath, breathe out and press the blue top of the injection pen, count to 15 as the medicine flows in and I hear the second click and, walla!
I will share a few slight incidents in the Enbrel Chronicles however.
First up, traveling with Enbrel.
My third shot would find me on a trip to Costa Rica, which meant traveling with a medicine that had to be refrigerated but couldn’t be frozen. I packed it in my backpack with the Enbrel travel ice pack and a larger ice pack. This actually stayed cold enough to make it through six hours on a plane and five hours in a car.
I lucked out, because in Costa Rica I had a fridge in my room. When we arrived the room wasn’t ready, so the very, very nice woman at Hotel Luna Lleyna in Playa Tamarindo (I highly recommend this place, but that probably belongs on a different blog) stuck my medication in the beer fridge. When the power randomly went out for a day, she filled a big container with ice to keep the medication cold.
All of this refrigeration was a bit of a pain, but dealable. Laughably, when I finally gave myself the injection, I didn’t let it warm up enough – it didn’t quite make it to room temperature – and the shot hurt quite a bit and left a bruise that lasted for the rest of the trip. I won’t make that mistake again!
Second, the glitchy blue button…
I was feeling confident about my injection after Costa Rica. I had done this a few times. It hurt, but it wasn’t that bad. I also now knew to make absolutely sure it was at room temperature, so I let the pen warm for 35 minutes before sitting down to give myself the injection. I did my little internal pep talk (not the five minute version, the 30-second elevator pitch version) and my countdown and pressed the blue top, nothing. I adjusted the pen, did the countdown, and pressed again, still nothing. I did another countdown, changed my finger placement and pressed again, nothing.
I began randomly pushing it from every angle, nothing, nothing, then randomly CLICK! I think I visibly jumped, but did manage to hold the pressure to my leg.
Not sure why it was so glitchy, but some of the medication definitely ended up on my thigh rather than in it.
Finally, a weird injection site welt.
After the startling injection the week before, I was a bit nervous, but this injection turned out to be easy and pain free. I was relieved. I felt I was finally making headway.
Then, about 12 hours later, while at work I may add, my thigh started itching. I was wearing a skirt, so I scratched and was appalled to find an orange-sized welt at the injection site. I Googled it and found it was relatively common, so I refrained from freaking out.
I used hydro-cortisone cream and the welt eventually turned to a bump and eventually faded (it took about 24 hours for it to disappear). I’m hoping that was a one time thing, but I’ll keep you updated.
“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.”
Alright, I have to admit I’ve been a bit of a slacker at updating this blog in real time. By now, I’ve (almost) become a pro at injecting myself with Enbrel, but I wanted to share my experience of my first injection.
OK, so first the good news. After some runaround with my insurance (and contemplating the worst case scenario of having to move back home because of expensive drugs), I got approved for Enbrel at only $30 per month. I was thrilled. I immediately filled my prescription.
Now the not so fun part… I went to the nurse to learn how to inject myself. I was nervous. I hate needles. In fact, one time, when my little sister was about 7 and I was 16, the nurse had me get my flu shot first to show her how “easy” it was. I nearly fainted. (Embarrassing, I know.)
Anyway, the nurse was very sweet. She sat with me and gave me all the information – the injection sites (I’ll go for the thigh, thank you very much, the stomach still freaks me out), warming the Enbrel to room temperature, possible problems and side effects (that part was scary). Then she informed me that I would be giving myself my first injection.
I went a little pale. Yes, I know I was there to learn how to do it, but I thought she would just tell me and then give me the shot. After all, it was my first one! But no, the nurse kindly informed me that “it doesn’t matter how long it takes – and there are no cameras in the room, so if I want to cry, I can cry – but I wouldn’t be leaving without giving myself a shot.”
I gulped. We practiced with a needleless pen. The thing I had the most trouble with was applying the right amount of pressure and not getting startled by the “click” noise. Finally, I felt I was ready (mind you, this was about an hour later). I got the pen ready, held with one hand perpendicular to my thigh, the pressure making the blue tip disappear into my skin. Then with the other hand I pulled the trigger (OK, that’s a little dramatic, I just pressed the blue button). I heard the click, counted to 15, and watched the blue replace the clear liquid in the pen’s window. Then I released, my first shot over, a spot of blood on my thigh.
Yes, it hurt. Yes, it was gross. Yes, I was a bit shaky and white. But I was elated and proud. I had “graduated” from stab school. I had conquered my fear. And hopefully this was the beginning of beating my RA into remission.
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.