Thursday, September 29, 2016

Rheum for Depression #RABlog

This week, I'm blogging as a part of RA Blog Week. Today's prompt: coping with depression. 

I'm no stranger to talking about how mental health issues interact with my physical health issues. I've been very open in talking about my struggles with Post-Traumatic Stress as well. Most of what I've talked about, though, is concurrent with but not caused by my rheumatic fun.

Depression, though, is something that I struggle a lot with. It's gotten a lot better as my physical health improves (and with my antidepressant) but it still lingers from time to time. Depression is also pretty common when you deal with any chronic illness. The isolation we often face as friends and family either leave our lives or share their disbelief about our illnesses increases our chances of depression.

With invisible illnesses, it's easy to fall into depression. We have these friends and families who don't believe us. We try to work jobs that won't accommodate us as much as we need because we aren't visibly sick. Dating? HA! Healthcare peeps are, often, less caring about some of the invisible illnesses, too.

Throw into the mix how unpredictable our invisible illnesses are and you're in for a treat.

One day, I can walk a mile. The next, I'm hobbling twenty feet to the bathroom. The day after? I'm sleeping to catch up on the sleep my pain prevented me from getting. 

Those things don't always happen in that order or as mildly as I make it sound.

The truth is that my rheumatic diseases have led to me missing important events in the lives of family and friends. This alone is enough to throw me into dealing with a depressive episode, but then I throw in the potential networking or professional events I've missed and it just compounds the frustration I have with my own body.

That's what it all comes down to, isn't it? I frustrate myself and do so uncontrollably. I'm unpredictable and unreliable, and not for a lack of trying. My illnesses cause those I love and care about pain, too, whether that's because of my inability to be consistent or how hurtful it can be to watch someone deal with pain knowing that you're unable to take it away.

When my illnesses can trigger someone else's depression? It just causes mine to get worse.

The beauty in all of this is that, by stopping the process of making our body the enemy, we can help to lessen the guilt of living with illness. By halting the viewpoint of our bodies as our enemies in our fight against illness and, instead, embracing what our bodies, minds, and souls need?

That is the epitome of self-care and self-love. That is exactly what we need more of.

But it's a process - a continuous process. Once you start, stopping just gets you back into the self-deprecation mode we've all come to know so well.

Do me a favor. Now that you've read this, go do something for you. Eat something decadent, take some medication if it's time, watch a silly YouTube video, or send Snapchats to your favorite people using silly filters.

Have you dealt with depression due to illness? What have you found to help you?

Wednesday, September 28, 2016

The Scoop on Biologics #RABlog

This week, I'm blogging as a part of RA Blog Week. Today's subject is the biologic.

When I was first learning about the medications available to treat my Systemic Juvenile Arthritis in 2009 and early 2010, I was horribly frightened. I had been led to believe that all of these side effects were worse than my illnesses themselves and were nearly guaranteed to happen. 

This is so far from true that it makes me angry to remember how my mother instilled this fear in me.

In doing my own research on the subject and talking to experts, both in the health care practitioner field and patients, I learned just how helpful biologics can truly be. Sure, there are side effects that can be scary and/or dangerous. Most often, though, the side effects are far less than the benefits you get from these medications.

Still, when I started Humira, I was sure I was going to turn into a hamster the next day. An irrational fear, I know, but a fear still. By the time I started Enbrel, a similar drug, that fear had dissipated. Things went incredibly well with Enbrel... and yet, my body built antibodies to it quickly, rendering it pretty much useless.

Antibody build-up is a very real issue with biologics because the medications aren't being effective in your body anymore. Sometimes that means that side effects are more prevalent because the benefits go way down.

It can also happen if the drug you're on isn't one that actually effectively treats your disease, too. Anti-TNF biologics such as Humira & Enbrel are generally not effective for those of us dealing with SJIA or Still's Disease as they target different forms of inflammation than are shown to be most active for us.

For that, interleukin (IL) medications are the most effective, such as Actemra, Ilaris, and Kineret. I'm currently on the latter and it has just about put my SJIA into remission. My rheumy and I aren't 100% calling it that at this point, but I have had normal inflammation levels in my body for 13 months because of it.

It's something that I'm not sure I remember ever experiencing in my entire life.

That doesn't mean I don't have hard SJIA days - I definitely do, but I'm able to manage them more effectively without having to resort to prednisone to get me by. I utilize topicals and additional NSAIDs and my tens unit to push me through.

I have to say, though, that my fibromyalgia has been the biggest problem since about March of this year. That isn't as easy to deal with, but is also not treated by biologics.

So, hey, biologics can be scary. It's true... but they can also change our lives beyond anything we could imagine. It's worth the risk to get the potential payoff.

What has your experience been with biologics?

Tuesday, September 27, 2016

My Journey to ePatient #RABlog

This week, I'm participating in RA Blog Week. Today's topic: how I became an engaged patient.

Yesterday, I talked about my origin story but stopped short of talking about how I became an engaged patient... complete with amazingly old pictures I took on my first laptop (and one from T).

Back when I started this blog, I hadn't seen a doctor in 13 years. That changed in early 2010 as I got a referral to a rheumatologist and was able to finally get some damn medical care... No thanks to my mother.

I grew up abused and neglected, meaning that medical care for my Systemic Juvenile Arthritis - something integral to my well-being - was not a thing. When I got back into medical care via school nurses in college, they legit told me that I knew my body better than they would and that they couldn't really help me with anything.

I felt like I was drowning in pain.

I came home and cried while sitting in a bathtub in my dorm apartment trying to ease my pain and calm down - and then made the appointment to get to a rheumy 5-6 months later.

After getting back into medical care, it was clear that many health care peeps that I saw didn't know about my illness. It was hard to be my own advocate while being a young woman dealing with pain. People didn't believe me about my pain or on my illnesses. In order to get the right care, I had to become an expert on my illnesses, on the medical experience, and on communicating with health care practitioners.

I had to learn to start questioning the system.

I began to add medical stuff into my life, on top of school textbooks, essays, and working multiple jobs. I moved and got a new health care team. 

It was a lot to take on, but the transformation wasn't complete until I was forced to quit graduate school. I had to step it up, and I did.

I spent hours sifting through academic medical journals, medical textbooks, and contacting some of the experts on my illnesses. I began to get more patients asking me questions and writing pieces I wish I had had early on in my lonely journey - especially those about insurance terms and the like.

And it's just continued from there. 

It's been quite an interesting journey to go from a college sophomore trying to learn about my illness in order to explain it to the hubby to turning into a patient expert. I wonder what 20-year-old me here would say about that.

What about you? What has your patient journey been like?