Tag Archives: diagnosis

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.


The Other Side of the Arthritis Battle: Jessica’s Story

With Mother’s Day a few weeks behind us, I can’t help but think about all of the ways my mother has been a vital support system in my battle against RA. An RA sufferer herself, she’s been a constant source of information and understanding when no one else seems to “get it.” If I didn’t have my mother to help me navigate through the pain, fatigue, and frustration, I’m not so sure I would have gotten to the place I’m at in my life so smoothly.

While I admire moms in general for their dedication to their children, I have a special place in my heart for those who have the added challenge of helping a child cope with disease or illness. Jessica is one of those moms. Jessica’s son, Waylon, was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) when he was just two years old. “We were out eating one Saturday night and when we stopped to get ice cream, I jumped him out of the car,” she recalls, “and rather than stand, he fell to the gravel. He wouldn’t put any weight on his left leg.” Jessica sought out answers, but it was over a month before the diagnosis came back as SJIA. “Those five weeks were excruciating. Knowing something is wrong with your child, but not knowing what it is or how to treat it, is a terrible feeling.”

According to the Arthritis Foundation, SJIA affects approximately 10 percent of the 294,000 children in the

Jessica and her family

Jessica and her family

United States suffering from juvenile idiopathic arthritis or related conditions. Unfortunately, it is also the hardest type of juvenile arthritis to treat and often the most destructive, affecting vital internal organs like the heart, lungs, and lymph nodes.

Waylon’s initial treatment involved steroids and Naproxen, which helped him to begin feeling a little better. Jessica had never heard of SJIA before Waylon’s diagnosis, but she was fortunate enough to have a wealth of medical knowledge at her fingertips. “We had a fantastic team of professionals at Cardinal Glennon Children’s Hospital, as well as Dr. Bhargav Kanani, Waylon’s Pediatrician, and my co-workers at Perry County Memorial Hospital. We were surrounded with a very strong medical support system.” All medical diagnoses come with their share of emotional burdens, but since I don’t have children of my own, I personally couldn’t imagine how difficult having a child diagnosed with SJIA could be. “The biggest hurdle was watching Waylon in pain and knowing there was nothing I could do about it,” Jessica admitted. “We were already giving him Naproxen and Tylenol and using heating pads on him and he still hurt. We tried essential oils. I was willing to try anything to help him.”

Waylon’s daily routine began to resemble one that most RA sufferers know all too well. This routine involved taking medicines twice a day, eventually becoming a daily injection. Jessica and her family did whatever they could to keep him comfortable, but Waylon could never be more active than he needed to be in order to get through the day. He managed school and his scheduled activities, but didn’t move any more than he absolutely had to.

Fortunately, after some adjustments and a sampling of different medications, Waylon’s doctors finally found the right formula for him. Now his only medication is an Actemra infusion that he receives once every 8 weeks. After eight years of treatment, 10 year-old Waylon has a routine that looks similar to those of his classmates. He has been able to participate in a variety of extracurricular activities, including Tae Kwon Do, soccer, basketball, and running. And he’s been pretty much flare-free for seven years.

Those of us with autoimmune diseases often try to find hobbies that accommodate our limitations, but Jessica says that she’s never had to look for “SJIA- friendly” activities for her son. “Waylon knows that whether it be in a sport or PE in school, if an activity starts to hurt a joint to stop doing it. His teachers and coaches know this, too. He has not had to stop an activity yet!”

SJIA, like RA, is an invisible illness. People are often shocked when they discover that Waylon has arthritis. “They don’t realize that kids can get arthritis.” In a final interview question for Jessica, I asked her if she was doing anything specific to spread awareness for her son’s disease. “I don’t know that I would be so formal as to say that I am helping spread awareness for SJIA, but I am always willing to talk to people about our experience, to share what has worked for us, what we have tried, etc. I have become a part of Genentech’s InspiRAtional Moms. I have also given my business cards to Waylon’s rheumatologist and asked him to pass them on to parents of other kids who have SJIA.”

Jessica, like the countless other moms with children suffering from serious diseases, is an example of how a challenging moment can be turned into a source of inspiration and strength. Arthritis is not an easy thing to live with, both as the sufferer and as a close relative to someone who has it. I understand Waylon’s pain all too well, but I don’t doubt that he’ll look back on his experience with juvenile arthritis one day and realize how lucky he is to have a mom who’s willing to give him as much of a pain-free life as possible.

For more information and tips for supporting a child with SJIA, visit www.sjiainfo.com.


D is for Disabled

This week I’m going to step back from my role as the voice of this blog. My goal as a writer has always been to inform, inspire, and to give others a chance to tell their stories. So this week, blogger and Fibro warrior Tammie Birdwell will be your voice. I met Tammie through my husband and have been corresponding with her for a few weeks. Even though she has Fibromyalgia and not RA, I asked her to write a post for me because we share the common bond of the autoimmune disease. While I am fortunate enough to not be totally disabled, I understand all too well the struggle she describes below. So now, I’m going to pass the mic to her. I hope you enjoy her entry as much as I did.

 

I have been remiss in my writing lately.  I attend school and it has been really tough lately.  I keep telling myself it’s because the classes are more difficult (which is true) but I also know that my thinking and logic are pretty broken.  For the new people reading this; know that I write from my Fibromyalgia brain.  The sentences might run on, or not.  I may use the wrong word or seem really random.  I write for folks with Fibro so I write FOR them by not trying to have perfect structure or grammar. I type what is in my brain and that seems to work.  I want to reach a large audience and I know how difficult it is for me to read long paragraphs. I very much want to get the the point, eventually.

Today I am talking about flare ups and disability.  <— there, a thesis.  Yes, I also try for the occasional giggle.

I am writing this today for two audiences.  I am teaming up with Alyssa Pierce, a new friend that has RA.  Fibro warriors have a lot in common with people that have RA.  Hell, we have a lot in common with anyone who is in pain all the time.  No one else can understand and for that I am glad, I wouldn’t wish this on anyone.

Now, I also like to keep my paragraphs short and to the point, this is a Fibro thing.  So once again, structure suffers a little bit, but I want everyone who reads this to find it easy and informative read.  I wanted to start this post with some information about Fibromyalgia flares.  I know that warriors with RA also flare up.  What I don’t know is if it is like our flare ups, or if it is different.

See, last week I was having a huge flare.  I was miserable and I couldn’t think in a sentence, let alone speak in sentences.  That one is what I call my thinking flare, it is usually accompanied by some burning on my skin and a feeling like my hair is growing.

I have another flare up and this is the one I call my physical flare.  This is what I am suffering right now, since yesterday.  It took me several tries to get out of bed.  My hands feel like they are going to blow up at any second.  My head feels the same, my vision is blurry, and I am working up the energy to take a badly needed shower because, yes, I put them off because they make me so tired.

It sucks so bad to get out of bed when it hurts to move.  However, a bit of advice?  I learned that staying in bed unless I am sleeping or getting lucky is not a good idea, no matter how badly you want to stay. It is called sleep hygiene and you have to force yourself to stay out of bed.  It sounds like torture but it is not.  It takes a while, and some nights I don’t even try, but it does really work.  I break the rules at times and take a nap but only if I am falling asleep where I stand, which brings me to the third type of flare.

This flare up is so intense in involves every muscle, nerve ending, ache, pain, and a feeling like your skin is on fire.  Those flares are so intense the only thing to do is lay down, you are not capable of anything else.  Which brings me to my next topic…  disability.

I belong to a lot of groups on Facebook and every single day I see people getting really excited because they have been given disability [benefits].  I am happy for them, but I thought that I could do this.  I thought that I could accomplish something.  I wasn’t wrong, but I am disabled.

I was a heroin addict 15 years ago for about three months.  Luckily I stayed off opiates easily after that, even with Fibro.  However, I had to come out to my mom and everyone else I loved.  I had to say, “I am a heroin addict”.  I thought those would be the worst thing I would ever have to admit about myself out loud.  I was so very wrong.

Having to say yes, I am disabled, I need help.  I need some income. That was the hardest thing I have ever admitted. Saying  “I am disabled” still makes my stomach hurt.  My family has suffered greatly because I am no longer able to work.  It took 4 years to get a diagnosis.  I know that I will get disability this time.  My heart is broken.  I was a dancer, a ballerina.  I was a cheerleader in high school.  Now I can barely get into the bleachers to watch my son be the drum major.

It is interesting; on my paperwork for disability they asked me where I hurt.  I laughed and laughed.  Everywhere, I answered.  Then it asked me several more times, in different ways, and every single answer was everywhere and always.  So, I even got to laugh a bit while I was filling it out.  Knowing though, owning, the title of disabled is a crushing blow.  I know that I am.  I knew that I was a drug addict.  This does not make it easier to say.

I used to work at the PA Renaissance faire putting women into corsets.  I loved it.  I loved making women beautiful.  I also had to quit there.  I want to go and see all my friends that still work there and I am wondering if one can rent a HoverRound.  I couldn’t even make it to the front gate without needing to rest.

These things could all bring me down.  These things could all make me want to quit, to give up. However, these things only make me want to work harder.  No one, and I mean NO ONE and NOTHING, can change the way that I live, but I am the only one in charge of my brain.

I choose happiness over misery.  I choose to laugh when I know I need to.  I choose life, no matter that I have to crawl sometimes.  I choose to live my best life.  I also choose to be happy.  You have the power, in your brain, to control your own destiny.  It isn’t gone, nothing important is gone.  It’s simply different and we just have to learn to love ourselves when our settings are on “different”.

It is so damn hard to try and explain what it is like when your brain and mouth refuse to work together.  I have worked for years to make my sons and my husband understand.  They finally do.  Want to know how I made that miracle happen?  I stopped trying to explain myself.

I didn’t hide anything (except the pain, we all do that) I just existed.  I stopped trying to make them understand and I started to live my best life in a whole new way.  I interacted with them and if I struggled to find words, I didn’t explain, I just make up words.  They will eventually learn your language. This new method, the one where we exist and let them watch, works.  It takes a lot of patience and a long time, but you will get there.  If I can do it anyone can.

For my words, when I lose them, conversation goes something like this :”Are we going to the field thingy to watch Rudolpho Hans play running ball?”  Which translates to, “Are we going to the stadium to watch the Saints play football?”  I know that first one was mostly inane gibberish.  However, I got A sentence out.  They will start to learn your language, I promise.

This just happened…  an example of my speech issues: in a text to my husband, “Except smokes.  The shenanigans cigs.  No… Monrovia..  dammit.. Morgan…  Fuck it.  Those cheap ones” That was my text to my husband.

I know that I should quit…  that isn’t why I shared this.  I shared this because it is real life..  My life…  Maybe yours too.  The cigs are Mavericks, I finally thought of it.  I really have to laugh..  this is funny.  I should write children’s books, I am excellent at coming up with fun, meaningless, quirky words.  They are easier than regular language most people use to communicate.

Warriors and new friends with RA, it has been a pleasure to write some words for you all, maybe I can help a couple people.  Remember, always, LIVE, LOVE, and FIGHT.  We got this.


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.


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