Day 12- You have lupus. Now what?

Today is day 12 of National Health Blog Month from Wego Health. Today’s topic: From the bonus prompts list, Advice for newly diagnosed patients.

February 2003 – I woke up in the middle of the night with sharp pains shooting down my left leg. I took some advil, angry that I was up an hour earlier than my 4:30am wake up call for swim practice.

March-May 2003 – Doctors, doctors, and more doctors; poking and prodding, running test after test.

Late May 2003 – “You have lupus”

After that – “eh whatever”

That’s how it went down ten years ago. I know I’m lucky compared to most lupus patients; my diagnosis took mere months rather than years. Ten years ago I didn’t know what it meant to have lupus. Ten years later I still have questions but I wish I would have given them credence a decade ago.

In joining the Georgia Chapter of the Lupus Foundation of America, I met 17 year old Natalie Bates. Natalie was diagnosed at age 12 and last year raised more than $5,000 for the Lupus Foundation. At 17 I was definitely not as self-aware or involved as Natalie.

Natalie Bates (on the left) is only 17 and doing amazing things for the lupus community. (Picture courtesy of LFA Georgia Chapter)

What would I tell my 17 year old self, or any newly diagnosed patient?

Find a support group- Having people who understand EXACTLY what you’re going through really helps. Friends can give support but only those with lupus truly understand and can offer useful advice.

Martha Stewart makes pretty binders for Staples that make organizing your health easy.

Create a “lupus binder”- The joys of being organized. Mine has sections for my rheumatologist and nephrologist as well as a section of notes from my original diagnosis (I had to have a copy of these to take to college). The front section houses my blood work results (yes every copy of every time I’ve had blood drawn). In the front pocket is a list of current medications. Back pocket houses family history, hospital stays, and immunization records. I present this binder to new doctors to review my lupus history and can track changes on my own. But, that brings me to my next piece of advice…

Don’t get yourself in a tizzy over your blood work- My nephrologist laughed at me this spring “don’t look at your blood work without me!” He was right. In the WebMD world we all think we’re dying of something. Take the time to go over your labs with your doctor. I always look at my labs myself and make notes to what questions I have, but I don’t interpret the answers on my own. It’s a balance because it’s important to be an active patient and take control but I’ve scared myself many times jumping to conclusions and taking results out of context.

Don’t hide- The more people know, the more they can help. A lot of people won’t and don’t understand, but they definitely won’t unless you fill them in. It’s important to work with your boss (or professors). I was shocked last week when I informed my employer that travel was becoming increasingly difficult and I had to be taken off the road for the foreseeable future. They were very supportive and made arrangements so I could recover. Keeping them in the loop was the right choice.

Be selfish- Friends want you at their event but you’re not feeling well, don’t go. Your food allergies prevent you from eating at a certain restaurant, chose the one you can eat at. It’s that simple. Don’t force yourself to do what others want if you’re not feeling well. Go to sleep at 9pm if you want. Eat at a restaurant that works for you. Yes it sucks when others are out but in the long run it’s better to miss one party than be sick for a week. I’m guilty of not following this rule all the time but I’m getting better.


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