writer elise

I'm Elise. I write. Because I must.


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2016 RA Blog Week – Final Day

Happy Friday world! We made it through the week. And, because it’s been RA Blog Week, we’ve learned and raised some awareness. Together, myself and the other bloggers have spent the week making this invisible illness a bit more visible. That’s a great thing.

I’m picking another wildcard today so that I can pass on some advice to all of y’all. I hope that my experiences walking through life with Rheumatoid Arthritis will help someone out there.

Thing #1: Don’t look back. Well, at least not for too long. Don’t dwell on the life you had before RA came to live with you. Look back at the happy moments. But don’t compare that life to the new one you’re living. Focusing on your pre RA life, especially on that pain free body you once had, is toxic. Accept your new normal.

Thing #2: Redefine normal every chance you get. An RA life is a rollercoaster. RA changes your body almost daily. You might become a human barometer like I have. Any weather change and my body sends out warning signals in the form of pain. That’s my normal. My normal used to be weakness and exhaustion. Before then it was pretending to not be sick. With RA you get the opportunity (yes, you read that right) to redefine normal over and over.

Thing #3: Find a support group. Maybe a face to face group that meets at a local church. Maybe a group of random strangers on Facebook. Maybe a network of bloggers. The point is, find people who are living an RA life too. Only people walking this walk can really understand what you go through every day. That level of understanding is vital.

I could go on and one but I won’t. Instead, I’m going to close up RA Blog Week with a second topic. The other folks who have been blogging this week with me. Our fearless leader (hi Rick!) has put together a great list of links to everyone’s blog. You can see it here. I highly recommend checking out the other blogs. You never know, one of my fellow bloggers might be writing something that will touch your heart.

I hope you all have had a great week. It’s been a blessing to spend it writing about RA. It has given this writer a much needed boost to her tired creativity.

Have a blessed weekend y’all.

~Elise

PS. I have a book coming out! (Yay!) Restoration Road will be released in October. If you want to know more about it, click here. And keep watching my blog for more information on when and where you can get your own copy.


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2016 RA Blog Week – Day Three

Afternoon to all you out there on the interwebs. Hope your day is treating you right. Today is a high pain day for me which is why I’m late writing my post for the day. I had to wait for the brain fog to clear a bit.

Today’s topic is biologics. For those of you that don’t know biologics are a special class of medications made from genetically-engineered proteins derived from human genes. They’re used in Rheumatoid Arthritis treatment to help suppress our over active immune systems. They can help halt the progressive joint damage done by our own rampaging bodies. They carry a long list of scary side effects but for lots of patients, they’re nothing short of magical.

I’m one of those people.

I started on Enbrel roughly 10 years ago. I had failed all the other meds that were the last steps before a biologic. Or rather they’d failed me. Methotrexate (a chemotherapy medication) made me lose entire days to the overwhelming side effects. Sulfasalazine made my liver freak out. I’d taken Prednisone off and on for so long that it wasn’t really effective anymore. There were more meds, but those were the big three that really tipped the scale for me.

My doctor let me pick the next step when those meds all proved to be wrong for my RA. I got to choose between Enbrel or Humira. My doc sent me home with literature and a follow up appointment for a few weeks later. And I did what I recommend everyone else do with possible new meds – I researched the hell out of them. I spoke to nurses and doctors about them (thankfully, I once worked in medicine so I have a great network of folks). I went to friends in support groups. I read everything I could about those two medications. I wrote pro-con lists. I prayed about it. I made sure that when that follow up appointment came I was ready.

Choosing Enbrel was the right thing for me. I don’t regret it one bit. I haven’t had any troubles on it, not once in 10 years. The only thing that isn’t fun is that it suppresses all of your immune system. Not just the part that attacks your joints. So I get sick at the drop of a hate. And stay sick way longer than other folks. I can’t give blood. I have to stop my meds for any surgeries or major illnesses. I don’t regret it at all though. Right now I’m on it and one other medication. That’s it. No other prescriptions. I take a few supplements to further support my body and control the RA, but over all, this is the least amount of medication I’ve been on since I was diagnosed way back when I was a kid.

Like I said, for some folks, biologics are magical. I’m deeply thankful that they are for me.

~Elise

PS. I have a book coming out! (Yay!) Restoration Road will be released in October. If you want to know more about it, click here. And keep watching my blog for more information on when and where you can get your own copy.


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2016 RA Blog Week – Day 2

Good morning everyone. Happy day two of RA Blog Week. I hope you’re checking out all the other bloggers who are sharing their stories this week. And I hope you’re learning some new things. I know I am.

Today’s topic is “Active versus reactive patients.” I think everyone starts out as a reactive patient. You put your faith in your doctor and just do what he or she tells you. I know I did. I just sort of floated along in a bubble of blissful ignorance for a long time. I was lucky to have a good doctor for the first 15 years of my arthritis journey. He took great care of me and I trusted him completely. However, when he retired I was left in the lurch.

I found a new doctor with ease and right away I realized that she wasn’t the same sort of doctor that I was used to. She didn’t listen well, often talking over me or dismissing what I was saying. She was also very quick to go right to medication or surgery for an issue rather than trying more gentle treatments first. I just tried to roll with it as best I could until I had to go get some labs done. When I got the paperwork from her office to take to the lab I noticed something. She’d completely diagnosed me with Psoriatic Arthritis. She hadn’t told me nor had I ever had any Psoriatic Arthritis symptoms. At my next appointment I pointed it out and was blown off.

I was done with her after that. Her complete dismissal of me pointing out that she’d given me an incorrect diagnosis was the last straw. I was no longer a passive patient trusting in my doctor to take the lead. I stepped up and took charge of my treatment from that moment on.

Needless to say, she and I butted heads once I stepped up. I moved on to another doctor not long afterwards. My new doctor is my partner in my treatment. He listens and respects me. Together we manage my illness. I’ve never been doing as well as I am today and I know that it is because I now take an active role in my treatment.

I hope that, if you’re still trusting your doctor to lead the way, you’ll start to change that. Educate yourself not only on your illness but on the wide range of treatments – both traditional and nontraditional. Don’t settle for getting by. Work with your doctor to find a the right balance for you. As patients, we bring something to the table that most of our doctors don’t. We’re on the inside of RA. We can teach them things they can’t learn from books. We you work with your doctor, your treatment experience will totally change. Trust me.

~Elise

PS. I have a book coming out! (Yay!) Restoration Road will be released in October. If you want to know more about it, click here. And keep watching my blog for more information on when and where you can get your own copy.