Miss Understood: A Taste of Remission

By: Arlene Grau, Columnist

If you ask me to plan something, almost anything that requires me being somewhere on a certain day for any amount of time, I would have to decline because I never know how I'll be feeling on any given day.

Now ask me to plan a family vacation that would take me to Hawaii, where I would be 5 hours away from my doctor by plane – well, that would be insane.

However, I did just that and the results were better than expected.

I had my Rituxan infusion a month prior to leaving in hopes that it would kick in just before I left. My body, however, had a different agenda. I began feeling ill the week after my treatment. On top of that, I suffered a bad fall at home. I sprained my ankle, bruised my hip, and hurt my knee.

Instead of making progress, I was taking several steps backwards. I had tried to prepare my body for months and it was beginning to feel like it was all in vain.

But my husband and doctor didn't allow me to give up. My doctor prepared an emergency plan for me before I left. He prescribed backup antibiotics in case I became ill, started me on a temporary prednisone dosage, printed up my most recent patient summary (since I was taking so many medications with me), and gave me contact information for a rheumatologist in Hawaii in the event that I needed to be seen. He even called the other doctor ahead of time and told me to email him for anything.

Although my body wasn't completely ready, I felt like I had the tools necessary to handle any medical emergency I may have.

Now, I don't know if it was the simple fact that I removed myself from all the stressors in my life, but I felt so much better while I was in Hawaii during that one week than I have since I was first diagnosed with rheumatoid arthritis eight years ago.

My theory is that the change in climate helped with the inflammation I was suffering from. I know that when it's very cold and dry, I tend to flare up and feel very ill. And when it's really hot and the sun is pounding down on me, I feel my weakest and just as sick.

But out there I was met with humidity and sunlight that didn't feel like it was stripping away every ounce of energy I had.

I had one or two trying days; granted I was doing a lot more than I've ever done at home as far as activities and walking go. But I was extremely proud of everything I was participating in. I even got to enjoy my 30th birthday in Hawaii, one I never thought I would live to see.

I knew as soon as we got home that something was different because I woke up feeling like I had been hit by a truck. As quickly as the swelling and inflammation left, it returned. My insomnia is back and my migraines are more intense.

But I got taste of what remission might be like.

It was a great vacation with a bittersweet ending because, instead of dreaming about the visual paradise I was in, I'm left day dreaming about the physical paradise I felt -- the one that had less limitations and more of my old self.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.