Category Archives: Awareness

Introducing the New MBWRA Facebook Page

I know I’ve said this beforefacebook-388078_1280, but I’m going to say it again- I’m overwhelmed by the feedback I keep getting from you guys. You’ve stuck with me, even through the times when life got hectic and I went MIA. Thank you so, so much.

I realized recently that it’s time to expand. I want to grow this community, hear from more voices (because I’m getting a little sick of hearing just myself talk), and send as much awareness as possible out into the world. So, My Battle with RA now has it’s own Facebook page!

I realize that I’m probably more excited about this than any of you are. I’m not offended, really. But I’m happy that I can provide a new space for discussion besides this blog, and I hope to continue growing and expanding. The page is brand new and looks a little empty right now, but that will change.

I hope you will come join me! Find the new Facebook page here.

Advertisements

The Happiness List

chalkboard-801266_640I refuse to make another New Year’s resolution.

I fail at resolutions worse than I do at speaking Spanish. In my 24 years of life, I’ve never accomplished a single goal that was set on January 1st. The 50 extra pounds are still there. I still drink wine and complain about my job(s). And no, I still haven’t finished that novel.

New Year’s resolutions make me feel like a failure, which in my opinion defeats the point of having one in the first place. We go into each new year with unrealistic expectations as to how much we can accomplish in 365 days. When we inevitably fail, we assume that means the goal is forever unattainable.

When you add RA or any other debilitating disease to the mix, New Year’s resolutions make you feel even crappier. You begin thinking that if you didn’t have that one flare, or if it had rained less during the year, then you’d be living the dream life right now. Nothing made me feel more hopeless than the idea that my RA was going to prevent me from finding that “thing” that would make me happier.

It’s been a rough few months for me. I’ve been feeling directionless and unmotivated, physically healthier yet no more successful than I was when I was flaring every day. Then by some unplanned glitch in the universe, I stumbled upon the Passion Planner (which you need in your life, just sayin’). In the first part of the planner, you’re asked to use mind maps to jot down all of your goals and dreams. Then you take those smaller goals and build them into your daily schedule.

This was harder than I thought it would be, but the payoff was worth it. I have a better idea of where I want to go in life and how to get there. Instead of broad and generalized goals like “lose 50 pounds” or “become a better writer,” my goals are broken up into multiple moving parts. Each step will bring me closer to accomplishing the bigger goal. No more faulty or generalized New Year’s resolutions.

I didn’t stop with the mind mapping though. I took the maps and put them into list form, that way I’ll have the pleasure of crossing things off as I do them. I don’t want to call it a “bucket list” because I don’t think that’s an accurate name. It’s not a list of things I need to do before I die. Instead, my list contains a bunch of things I want to do that will bring me closer to living the happiest life possible. It’s going to let me explore the things I’m passionate about with greater depth. They are all small things that are leading to the fulfillment of a larger dream. Even if I don’t get through the whole list, I’ll know that I took the steps to being a happier person. That’s a lot less daunting.

RA taught me that sometimes we need to take baby steps. Maybe it should have helped me to realize that the rest of my life works in the same way.

No one expects us to get out of bed in the middle of a flareup and run a marathon, so why do we pressure ourselves into accomplishing a hefty goal in a single year? Slow down, enjoy the journey. Moving slowly towards happiness is better than not moving at all. No one will judge you if your New Year’s resolution is to stop making more resolutions.


Autoimmune Awareness Month

aarda.org

aarda.org

Rheumatoid Awareness day is in February, but the entire month of March is dedicated to all autoimmune diseases. RA sufferers are not alone- 50 million Americans are suffering from one (or two or three) of the hundreds of known autoimmune diseases out there. Compared to other diseases, there aren’t many dollars going into autoimmune research. So let’s keep all of those people in mind this month and try to educate anyone willing to listen. That’s how change happens.


Having a Conversation

I love my rheumatologist. I trust his advice and the decisions he makes regarding my treatment and often don’t question his reasoning behind those decisions.

But before finding him, I was subjected to the ignorance and stupidity of many doctors. I went through 5 general practitioners before I took it upon myself to do Internet research and make a first appointment with my rheumy. DrugFacts-MedicationProbThe scary common theme among those doctors was that they were willing to write out prescriptions for just about any reason. There were prescription fish oil tabs, NSAIDs, aspirin/codeine concoctions, antidepressants, and a slew of other drugs that, in hindsight, make my liver do flips just thinking about them. But ya know what? I never questioned them. I blindly trusted the “MD” after their names to mean that they were automatically right and that I shouldn’t ask questions.

January 26-February 1 is National Drug Fact Week, and I’m taking a moment to remind you that you should start a conversation with your doctor about your medications. Here are a few statistics:

  • 700,000 ER visits each year are from incorrect medication usage (Source: AmericanHealthCare.com). I don’t know the specifics of this fact and whether or not this includes people who take shared prescriptions, but it’s worth mentioning that you should never take any drug that hasn’t been prescribed to you. Shared prescriptions don’t take into account your weight, age, level of health, and drug interactions. Assuming that you’re taking your own prescription, ask your doctor questions. Ask him to repeat instructions (Do I take this daily? Twice daily? On an empty stomach? Should I not take it with orange juice? What are possible side effects?). Don’t rely on the label on the bottle to tell you what to do, and don’t feel ashamed or worried that you’re wasting your doc’s time.
  • 2/3 of all doctors’ visits end with a prescription being written (Source: TalkAboutRx.org). Clearly, I’m not telling you to develop a distrust for your doctor or that you should refuse to take your medication. But this is why a conversation is needed. Make sure the prescription that you’re being given is truly needed and not just his way of dismissing you from his office.
  • On average, at least one drug is recalled in the US each month (Source: Reuters.com). My mother was on an RA drug DrugFacts-Recalls2called Bextra for years before it was taken off the market in 2005. She claims it was the only drug that ever worked for her and controlled her pain, so of course she didn’t care about the possible side effects it could have. However, it doesn’t hurt to occasionally do some research on your medications, just to see if they’ve been under scrutiny lately. American Recall Center has a wealth of information about drug safety and current pharmaceutical lawsuits.

I’m not condemning all doctors or prescription drugs. I’m thankful for the quality of life that my doctor and medication have given back to me since my diagnosis. But I make sure to read up on every prescription I take, and I urge you to do the same.

 


In This Together: The Bond Found in Chronic Illness

This blog has become a far greater project than I ever thought possible. I began writing here during a very difficult point in my life. I’ve written about my ups and downs, successes and failures, and general musings about life with the honest belief that no one would ever care to read what I had to say, but that I had to try to reach out to others anyway.

Then I started receiving emails from people telling me how much I’ve affected them with my writing. What many of them don’t realize is that their emails affect me too, and the last such email I received is the reason for this post.

Cameron first emailed me back in late August and shared his wife Heather’s story with me. Heather is a Mesothelioma survivor, which I’ve since learned is a rare title to have. She was diagnosed just months after giving birth to their daughter, Lilly. Cameron and Heather have a mission similar to mine: spread awareness about a seriously misunderstood disease.

Heather and I have very different diseases, but there is still a sense of solidarity. Much of the advice Heather gives to those with cancer is helpful for those with RA. So today, on Mesothelioma Awareness Day, I wanted to show my support of Heather and everyone else battling Mesothelioma by giving her (and Cameron!) a voice in this community.

 

A: I guess we’ll start with the obvious: What is Mesothelioma?

H: Mesothelioma is a cancer of the lining of the organs. There are three main types: Pleural, which is the lining of the lung, peritoneal, which is the lining of the abdomen, and pericardial, which is the lining of the heart.

A: Did you know something was wrong long before being diagnosed?

When I had Lily, 3 1/2 months prior to my diagnosis, they told me when I was in the hospital that I was anemic.. this was the first clue something was amiss, however, just having had a c- section, it didn’t seem like a big deal.. they told me to just be aware and perhaps eat more red meat. Then a couple of months later is when I knew it was more than just post partum symptoms. I was tired all the time, and extremely short of breath.. this is what made me go to the doctor.

A: I can only imagine how terrifying a cancer diagnosis is. How did you cope with all of the emotions you most likely felt after your diagnosis?


H: After the shock wore off,  I guess I would say a quiet determination set in. I had a tentative treatment plan laid out before me, and I just concentrated on getting through one day at a time. I took a leave of absence from my job, so I could spend as much time with my daughter as possible. I sought out my pastor, and went to him for prayer once a week, as well as keeping busy. I didn’t let my mind go to the negative.. I would beat this.. I had to.

A: Lots of people want to know how they can best support their ill spouse. Was there anything in particular that Cameron did for you that helped make the treatment process easier?

H: At first he was so angry.. it was hard.. we weren’t really talking much about it because he would just get so mad. Then all of the sudden, he made a turn around and he was my rock. I’m fiercely independent, and like to have control over certain things, and at a time when everything else was so out of control, I had to the over the travel arrangements and appointments. He let me do what I needed to do. He didn’t try to take over, he didn’t treat me like I was helpless or useless, quite the opposite, he stood by me, and encouraged me. He kicked me in the butt when I started getting down, he kept me smiling and laughing..And as far as parenting Lily, he was such an amazing help.. I don’t know how I would have done this without him.

A: Cameron, how did you cope with your wife’s cancer and your new role as her caregiver?

C: I was so angry. I have to say I didn’t handle her diagnose very well.  This is not what I signed up for when I got married and wanted to be a dad. I was faced with the possibility of raising Lily alone, and I was not ready. Once the anger subsided, and I realized people really wanted to help,I did everything I could to make this easier on Heather.

A: When I was initially diagnosed with RA, I turned to my writing in order to find strength. What was your outlet?

H: I felt like such crap for a year, that it took all I had just to be a mom. I didn’t really have or need an outlet. I simply didn’t have the energy for it. As time went on, and  started feeling better, I did a lot of things with my daughter.. just lately has writing become something I use, as well as drawing.

A: One thing I realized right away is that the RA community is very tight-knit. In a matter of a few clicks, I was able to connect with thousands of people just like me with a ton of tips and information. Did Mesothelioma patients have this kind of support system before you launched your blog and website?

H: When I was first diagnosed,  I felt utterly alone and disconnected.. No one had heard of mesothelioma, and when I did finally meet people who had it, they were much older men.. It took 4 years for me to connect with the meso community through the Mesothelioma Applied Research Foundation (www.curemeso.org) I went to their annual symposium, and met other survivors.. WOMEN survivors, my age! It was like a whole new world opened up to me.  I knew I had a lot to give and that is why I started the blog.. I didn’t want someone newly diagnosed feeling like I did..I want to communicate with people and connect them to all the resources available.  They can connect and find my story at www.mesothelioma.com/heather

A: If you could only give one piece of advice to someone battling an incurable/chronic illness, what would it be?

H: Find a specialist. Don’t be satisfied with what your family doctor says. Had I listened, I would not be here today.  Finding someone who knows your illness and knows what to look for makes all the difference in the world.


Thefrugalcrafter's Weblog

Groovy craft projects, crafty recipes and other artsy stuff.

Rebirth of clarity

Live out Loud, Love, Fight, Create and Share

Prose, Poetry, and Coffee

As the title explains, I will post my prose or poetry on a weekly basis (or whenever I feel so inclined). And to jazz things up, I’ll post some of my favorite literary quotes or favorite poems. (I just threw coffee in the title...so *annoyed face* I've gotta clean that up...with my tongue. I love coffee...)

The Clovers Project

Good support is better than good luck.

5x5

Strong, Clear Literature

RAClaRA

A Young Adult's Battle with Rheumatoid Arthritis

Globe-T.

Le Bonnet voyageur • The travelling Winter Hat

The Thinking Writer

Classes & Community for People With Ideas

MFwAiting

You're Doing Better Than You Think You Are.