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.


Why We Need More Ice Bucket Challenges

During the final weeks of August, I couldn’t sign onto Facebook for more than five seconds before stumbling across yet another ALS Ice Bucket Challenge video. These videos featured people, both ordinary and famous, dumping buckets filled with ice on their heads and nominating three new people to participate in the name of raising awareness for Amyotrophic Lateral Sclerosis, a neurodegenerative disease that affects the motor neurons. If a person was challenged, they had 24 hours to post a video or they had to donate $100 to the ALS Association.

I was getting cranky. The environmentalist half of me cringed with each new video that popped up. I considered all of the the people who don’t have access to clean water. I thought about the awful drought in California and how despite lacking water, people were continuing to waste so many gallons for the sake of 20 seconds of Facebook fame. Like many of the other trends that I ignore on social media, I ignored this one too and hoped that no one would ever challenge me.

Then I was nominated. The thing I had spent so much time passively ignoring was now staring me in the face. Do I just pretend I didn’t get any notifications? Do I just write a post saying I was donating and that’s that? Or, do I try to see the good behind it all?

I had to start looking at the facts. Donations had hit 8.2 million dollars by that point. Even if people were only participating to be a part of the crowd, they were learning what ALS was in the process. I knew what the disease was because of stories my grandmother told me about her older sister, who died from it. But according to the ALS Association website, only 30,000 people in America have it. $8.2 million raised to help find a cure for 30,000 people. You have to admit, it’s an impressive and admirable feat.

That’s when everything clicked. I was looking at this challenge from the wrong angle. When I removed my social media bitterness from the equation, I realized what a powerful tool the ALS challenge was. Couldn’t this same concept be applied to other causes? Causes like RA awareness?

All of us with RA complain when someone compares our condition to their grandma’s arthritis. We’re often accused of “faking” illness. And we’ve all had that moment when we wish more than anything that an unsympathetic healthy person could switch bodies with us for just ten minutes.

No, I’m not advocating that we dump water on ourselves. What I am saying, however, is that sometimes advocacy goes far beyond newsletters and 5k runs. We live in a time where technology rules our lives, and the Internet is far more powerful than we think. If the Internet can give us RA forums and blogs full of hope and support, then couldn’t it also help us find a cure?

I’ve seen some people with RA try to create their own ALS-esque Facebook challenges, but they don’t seem to be catching on. I hope one does someday, but that will require large numbers of participants.

Anyway, I manipulated the ALS challenge so I could participate. Rather than dump fresh ice water on my head, I decided to jump into 55 degree pool water at midnight. Believe me, it wasn’t pleasant.

It would be wonderful if RA awareness could become a mainstream topic. Let’s work on that.


The Shaving Dilemma

I realize that most of the men who follow this blog will have absolutely no interest in this post. That doesn’t mean I’m not going to talk about it, of course.

Shaving. In the U.S., it’s basically expected. Those who deviate are quickly labeled hippies (I’m not saying being a hippie is a bad thing. I’m merely pointing out stereotypes). So what happens when a woman in her early twenties begins finding it difficult to continue this ritual?

I’m glad that I enjoy wearing jeans in 90 degree weather, because I happen to be said woman. That whole “bending down to shave my legs everyday” thing ain’t working anymore. I might be able to get away with it if I had a bathtub to sit on, but all I have to work with right now is a walk-in shower.

Talk about frustrating. No, I don’t enjoy the feeling of having ape legs. And as ridiculous as it sounds, I’m too damn stubborn to buy a shower stool. I contemplate, I research various products online, but I never purchase. Quite frankly, I think I’m just ashamed of the reaction people will have if they find out I have one. A shower stool is an “old lady thing.” I know I’m being stupid. Watch, pretty soon I’ll be writing a glowing review on one of them.

I think I’m ranting here more than trying to make a point. I guess the moral of this story would be that sometimes we’re forced to do things that might embarrass us for our own good.  And that sometimes you just need to suck it up and deal with it so that you can be a productive human being.

Now this particular human being needs sleep. Good night all.


RA And Sjögren’s Syndrome

Though I’m living more pain-free these days, I don’t think my eyes got the memo. Quite frequently I wake up feeling like I spent the night frolicking through a windy desert. Sometimes I’m forced to leave my desk randomly throughout the day (as I just did while in the middle of writing this sentence) to dart into the bathroom and attempt to put eye drops in my eye (I miss on the first try every time. Without fail). It becomes a bit of a problem when your job requires you to stare at a computer all day.

It’s not rare for Rheumatoid Arthritis to affect other parts of the body besides the joints. Sometimes certain medications people take for RA are the culprits. A lesser known fact is that there are other medical conditions that develop as complications to autoimmune diseases like RA. Sjögren’s syndrome is one of those complications. It is an inflammatory disease that affects tear and salivary glands. According to the American College of Rheumatology, between 400,000 and 3.1 million adults have Sjögren’s, and half of those people have a disease like RA or Lupus. A rheumatologist can test for it during a routine visit. I haven’t been tested for it, to the best of my knowledge. Either that, or I have been tested for it and it came back negative.

The good news, it seems, is that the symptoms of Sjögren’s may go away on their own. Certain RA drugs like Plaquenil may help alleviate symptoms.

Even though my eyes get dry and itchy and my mouth sometimes feels like it’s stuffed with cotton, I’ve found that drinking a lot of water and keeping artificial tears in my bag really helps. My favorite brands are Blink Tears and Clear Eyes Natural Tears. Just make sure that whatever drops you get don’t contain an antihistamine or other allergy component.

Anyone else have this issue? What have you done about it?

 


Hobby Lobby vs. Rheumatoid Arthritis

While I try not to get political in my blog postings, yesterday’s Supreme Court decision in favor of Hobby Lobby is too big a deal to not talk about here. If you have no idea what I’m talking about, check out this article from Mashable.

The ruling is appalling. Not only did some men decide that it was okay to take away women’s reproductive rights in the name of religion, but lots women now have something extra to worry about: the consequences that come from getting pregnant while having a serious disease. Okay, sure, women can still go buy birth control on their own. It just wouldn’t be covered by insurance. But birth control is expensive, especially if you’re already struggling to afford the medications necessary to keep you alive.

Most people know that cancer patients need to come off their chemo drugs before trying to get pregnant. What most people don’t know is that women with autoimmune diseases like Rheumatoid Arthritis are often prescribed those same chemo drugs to combat their immune systems. Drugs like Methotrexate are poisons that often lead to miscarriage or serious birth defects.

I’m lucky. My doctor has decided that I don’t need aggressive treatment for my RA yet. He’s purposely keeping me on what he considers “baby friendly” medication for as long as possible. Most women don’t have that option. Women with aggressive autoimmune diseases have to plan their pregnancies as much as two years in advance. They need to quit their medications and allow the drug to work its way out of their systems before they can even try to conceive, which can take months or years.

I can’t imagine how painful this ruling is for these women. I can’t imagine being told that I have no choice but to risk suffering through the heartache that follows a miscarriage that would have been avoided if certain forms of birth control had been available.

I have RA, I’m engaged, and I’m looking for a full time job. Do I seriously need to limit my job options because my future boss may have some ridiculous vendetta against my reproductive health and the choices I make with my future husband? Anyone else find it highly ironic that Hobby Lobby’s owners claim they won’t support abortifacients (chemical abortions), yet they just made it more possible to have unwanted spontaneous abortions via chemo drugs? Yeah, a spontaneous abortion (miscarriage) is not the same as an abortion. I get that and I’m not trying to start an argument over which is worse.

My point is that no one should have any right to dictate the decisions I make based on their beliefs. Religion is something that is supposed to be personal. I’d never try to enforce my beliefs on anyone, and I have no respect for people or companies trying to push me to follow their supposed morals. Where is the morality in putting a couple through emotional and physical trauma?

If this whole argument is over “religious freedom,” then where the hell is mine?

 

 


My Miracle Pen

I’m a writer. Which means I write things, well… a lot. When I was first diagnosed with RA I was terrified that my painfully swollen and stiff fingers would prevent me from being able to pick up a pen. For the most part, I was right. The skinny, generic pens that you can buy in packs of 12 at the grocery store weren’t cutting it anymore. Inkier ballpoint pens and gel pens fixed the problem of having to press down hard on the paper, but they were still awkward to hold. So then I tried fatter pens, which were easier to grip, but they still required pressure to work. I was getting one benefit or the other, but never both.

So like any other frustrated, Internet-addicted young person, I turned to Google. That’s how I stumbled upon the PenAgain. It’s a weird wishbone-shaped writing instrument meant for people with arthritis, carpal tunnel, and other debilitating diseases. It’s designed so that you use the palm of your hand to guide the pen and apply pressure. Since a PenAgain pen only costs $5, I was willing to take the risk despite my initial skepticism. It couldn’t hurt to try it.

I pretty much fell in love with the pen, in case you didn’t get that vibe from the title of this post. It replaced every other pen bouncing around in my backpack. I felt less panic going into 3 hour-long college finals because I knew I could tackle the essays without worrying about my hands giving out. It was easier to jot down messages and fill out paperwork at work. Yeah, I totally got some strange looks from the people around me when they saw me using it, but that hardly matters.

Even though I’m in remission and can use regular pens for the most part, I still gravitate towards PenAgain. It’s easily one of the best RA-related purchases I’ve ever made. My only critique is that there are occasions when the pen will stop writing in the middle of a word, so I find myself scribbling on a piece of scrap paper to get it working again. Also, because of its design, the ink cartridges on these things are pretty short, so if you’re going to be using it a lot you’re going to want to have a backup pen or a stockpile of ink refills. I don’t mind this part so much because the refills aren’t expensive at all, and I realize that I write more than the average person on most days.

You can purchase a PenAgain pen (or pencil!) here.


Turtle in Peanut Butter

I hated running as a child. HATED it (and I was on the track team, go figure). I always finished last, was easily out of breath, and I knew I’d be limping for the rest of the day after a meet. In hindsight, running would probably have been less stressful if I had been aware of my RA.

Taken from Facebook

Taken from Facebook

Naturally, one would think that I would continue avoiding it at all costs. Except, after 10 years of a strict no-running policy and two years away from physical activity in general, I had something to prove to myself.  If the rest of my life is changing, why should my exercise routine stay the same?

So last week I decided it was now or never. I needed a way to de-stress fast. I called up my friend, downloaded the Couch 2 5K app, and headed to the park. The meme to the left is a wonderfully accurate representation of how that session went. And you know what? It doesn’t matter anymore.

I was out of breath. My sides were hurting and my muscles were on fire. I wasn’t sure I could run another step. I couldn’t keep up with my friend at all, and she kept doubling back to meet up with me so that we could at least do the walking portion of the program together. I could have made an excuse at any time, blamed my joints for being uncooperative. But I got up and did it.

In hindsight, it was never actually about running. My goal isn’t to run marathons or break records. The goal was to find a freedom that I thought was long gone. Two years ago, I could barely pull myself out of bed each day. Walking was difficult and stairs were impossible. Exercise? Ha…

I’ve come a long way. I accomplished a goal I never thought possible. The fact that I I’ve been accomplishing it without any sort of joint pain is just an added bonus. Every lap around the track is one more win against RA. This disease has taken so much away from me, but I’m drawing the line here.

Old me had to turn down plans with friends because it required walking more than a few blocks. New me is walking 4 miles a day and running for twenty minutes on top of that. That freaking rocks, and it’s better motivation than the 87492856875445211268089237 purple “Participant” ribbons I’ve collected. I’m getting my life back.

 


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