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.


RA and Grief

This week Tina Buddha published an article I wrote about grief. I’ve been overwhelmed by the number of complete strangers who have reached out to me to share their stories. There was one message in particular that stuck with me though, from a woman who mentioned that her entire body started shutting down after the death of her mother.

This blog was started so many years ago, yet I don’t think I ever really talked about how grief is what set me on this particular journey with RA.

A few months after my father died, something felt “off.” I was slowing down, sleeping more and moving sluggishly through my days. I figured the issue was more mental than physical, considering the emotional trauma I’d just endured. Doctors diagnosed me with depression, handed me a prescription for Prozac, and called it a day.

Stranger things began happening. The first time I realized there was a bigger issue was when I was sitting in 3rd period history class taking a written exam. My hand locked up completely. My fingers wouldn’t move on their own at all, and there was a searing pain that traveled from my wrist to my fingertips. I was terrified. Depression didn’t do things like this.

Some weeks after, I woke up and couldn’t pull myself out of bed. I limped around like an old woman for the next few days, couldn’t get comfortable while sitting or lying down, and every joint of in my body felt like it was on fire. Yet, according to doctors, it was still only depression. I still didn’t believe them. I couldn’t believe that depression alone could take an active, healthy teenager and age her this much over night (that’s not to say I don’t think depression is a crippling illness. I just knew this was different).

It was almost 4 years after my father’s death before I was officially diagnosed with RA. In truth, I think the only reason I got diagnosed was because I kept arguing with doctors to test me for things, but that’s a blog post for a later time.

When my rheumatologist began questioning me about my childhood, we realized that I had RA for pretty much my entire life. I had just been symptom-free, aside from some obvious signs of the illness. So why did the death of a loved one give me a full-blown, active autoimmune disease?

I did some research after my diagnosis. According to the Arthritis Foundation, there are some people who are born with gene markers that make them more susceptible to developing Rheumatoid Arthritis. Different things can trigger these markers- bacteria, viruses, hormones…and stress from trauma.

I realize that the death of a loved one isn’t always traumatic. In my case, my entire world came crumbling down. My father was everything to me, which I think is pretty clear in that article I wrote.

Having to deal with both grief and an autoimmune disease together sucked. In a way though, I’m glad they happened at the same time. I think I got through the first few years of my illness because I knew I was strong enough to fight. Battling grief taught me how much I was capable of enduring.

If you have an autoimmune disease that was triggered by grief, I’d like to hear from you. Let’s build a community of understanding.


2015 in review

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 3,600 times in 2015. If it were a cable car, it would take about 60 trips to carry that many people.

Click here to see the complete report.


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.


I’m Living a Label

Not much has changed since the last time you guys heard from me. I’m still in remission and relatively pain-free except on rainy days.

I’ve been seeing lots of new doctors lately for reasons not caused by my autoimmune disease (thankfully and surprisingly). The questions always start out the same: what medical conditions do you have? What medications are you taking?

My response is usually, “I have Rheumatoid Arthritis, but I’ve been taken off my medication because I’m in remission and symptom-free.” Normally, that’s a good enough answer. Some doctors might ask me how long I’ve been in remission for, which I think is a valid question.

That wasn’t a good enough answer for the last specialist I saw. “You know, doctors give symptoms labels just for insurance purposes. If you really had arthritis, you’d be in pain all the time. There’s no such thing as remission for that disease,” she said. She said something similar about a more recent medical diagnosis that I’ve been given.

Huh?

Okay, I get it. You don’t want your patients to have self-fulfilled prophecies where they use the disease as an excuse for stuff. It does happen. But clearly lady, you don’t know me.

Personally, I think this is a dangerous game this “professional” is playing. For me, a diagnosis was a relief. I finally had a name for the suffering I’d been experiencing for quite a few years. In that sense, yes, I’m labeling.

But I’m labeling the condition. Not me. I don’t walk up to people and introduce myself like, “Oh hey! I’m Alyssa and I have RA.” Mostly because I’m an antisocial asshole and won’t walk up to you at all.

I also don’t think it’s fair for someone who isn’t personally experiencing what I’m feeling to tell me that my disease is not real or valid. Especially when said person is not a Rheumatologist. This woman hasn’t seen me at my worst, on the days where I was completely bedridden from the pain. I may not be suffering now, but my blood work has always said otherwise. There’s actually comfort in having a name for the monster you’re battling. It takes out the unknown that eats away at your psyche.

So, Lady-that-is-Having-Her-Credentials-Doubted-By-This-Person, I’m gonna stick with my labels, thank you very much. Until you can guarantee that I will never be sick or in pain ever again, or prove that I never had RA in the first place, I’m going to keep telling doctors that I have RA that’s lying dormant for the time being.


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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

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5x5

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Sharing my space of myself with the autoimmune disorders rheumatoid arthritis, Ehlers-Danlos Syndrome, Hypermobility Type, and fibromyalgia.

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Le Bonnet voyageur • The travelling Winter Hat

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Writings of a Mrs

Follow my journey to writing, Blogging and publishing my musings..

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