Category Archives: Daily Life With RA

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.


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.


What the Stomach Flu Taught Me About Autoimmune Diseases

In an unfortunate twist of fate, I succumbed to the stomach flu this past Sunday, the night before I was supposed to go back to work after spring break. I’ll spare you the grotesque details of my illness, but let’s just say that it’s the worst I’ve felt in a long time. Thursday was the first time I was able to eat more than 6 saltine crackers and a banana in a day, but even now I can’t manage my average food intake.

I’m not someone who can take a day off. I’ve gone into work with head colds, laryngitis, accident injuries, and terrible RA flares. A workaholic, if you will. But this time, I couldn’t manage much more than to lay on the couch all day and sleep for 16 hours at a time, despite how much I desperately wanted to get up and answer my work emails. I didn’t have the energy to open a laptop or read a book. For the first time in a very long time, I went two whole days doing absolutely nothing. I couldn’t even pull that off back in February after my accident.

Sometimes I think I need these kinds of things to remind myself how I need to slow down and become more aware. I feel great now in terms of my RA. But the 4 days spent in bed were driving me absolutely insane. If a stomach virus was slowly killing my soul, then clearly I’m out of touch with the reality of having an autoimmune disease. If anything, this is one more reminder to appreciate how much I’m capable of doing at this point in my life. I’m not confined to just merely existing like so many others battling health issues, and while vomit is one of my worst fears ever, I’ll count this experience as a humbling moment.

 


RA After Bodily Trauma

To sum up a long and complicated story, I was in a car accident at 3am on Monday. My airbags deployed. My car was totaled. A trip to urgent care on Tuesday ruled out spinal damage, but I did get a diagnosis for bad whiplash. I’m taking muscle relaxers that make me feel groggy and bleh (which is the most accurate description I can muster at this point) so I don’t feel like writing much this week.

Since the accident, I’ve noticed two things. One being that I could potentially have Raynaud’s disease. It was -12 degrees with the wind chill factor the night of my accident. By the time the car was towed away and I was done talking to the cops, my feet were in so much pain that I couldn’t walk. The defrosting period was even more painful. It felt like someone was stabbing my feet repeatedly with a knife, and no amount of moving or sitting or rubbing my feet helped.

My second observation is that after Monday morning, my joints started feeling hot and swollen. I’m pretty sure I’ll be having a full blown flare soon. I’m wondering if the crash pulled me out of remission, since people often say that they were diagnosed with RA after a traumatic injury.

I made an appointment with my rheumy, so we’ll see what happens. In the meantime, I’ll be parking myself on the couch for the weekend.


Blogging and RA Remission

After a series of never-ending anxiety attacks a few weeks ago, I realized I needed to put on my big girl pants and get my life together. But that’s not the moral of this story. I took to the Internet in the midst of my anxiety attacks to search for a way to manage my anxiety without having to resort to medication. I already take more pills than I’d like to, thanks to my immune system.

If you type “Natural ways to cope with anxiety” into Google, one of the most common suggestions is to keep a journal of your feelings. That’s such a no-brainer that I felt stupid for not thinking of that on my own. And it’s not like I don’t have 21,484,o86,102 blank journals lying around. I get at least one for every birthday or gift-giving holiday (writer problems, except not really).

So, here’s the interesting thing. I found this article by Maud Purcell on PsychCentral.com which says the following:

There is increasing evidence to support the notion that journaling has a positive impact on physical well-being. University of Texas at Austin psychologist and researcher James Pennebaker contends that regular journaling strengthens immune cells, called T-lymphocytes. Other research indicates that journaling decreases the symptoms of asthma and rheumatoid arthritis.

Did this blog lead me to remission? I always thought of it as a place to rant about how much my life sucks sometimes. I never considered the idea that it might be a form of physical therapy. Would I still be almost bedridden if I never took the time to write here? Food for thought.

So, I guess I’ll have an anxiety journal and an RA blog. If it helps, then it’s worth the extra effort, no?

Leave a comment below if you journal for your health.

 


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