Thursday, September 01, 2011

Venus Williams has Sjogren's Syndrome and I Have Advice

I'm reading: Venus Williams has Sjogren's Syndrome and I Have AdviceTweet this!

Hi Venus,

I was shocked to see Sjogren's Syndrome noted as a hot topic on my Alexa toolbar. I had to click. Nobody ever talks about Sjogren's Syndrome (SS) except for the people who have the autoimmune disease, mostly women, and rheumatologists. I'm sorry to hear about your diagnosis.

Draft 1: It sucks now, but it gets better. I'm living proof!

Draft 2: Sorry to break the news, but no private medical insurer will touch you until 2014 when they have no choice (unless the Republicans send us back the old way where only healthy people get the care they need).

Draft 3: The Advice Route-

Make sure you have a good dentist and visit 3-4 times a year for preventative care. With SS your immune system attacks your salivary glands, which means less saliva and low quality saliva, which makes your teeth vulnerable and can lead to some pretty bad damage. Also, floss daily.

Find a good rheumatologist. Believe him when he tells  you that you will likely develop rheumatoid arthritis or lupus in the coming years and listen to his treatment plans. I'm thinking you can afford a second or third opinion, so get it.

Find a good opthamologist. SS attacks the body's moisture-producing glands, including your tear glands. This is bad for your eyes.

Lubricant eye drops like Refresh by Allergan* can offer a lot of relief. Carry them with you at all times. Try not to leave the little droppers like a bread crumb trail everywhere you go. This is bad for your relationships.

If you think some babymaking action is in your future, find a good maternal-fetal medicine practitioner (high-risk OB). Hopefully, like me, you will be one of their most boring cases and your babies will be just fine.

Change your mind. For someone like you, a true champion and top-notch athlete, a fighter, it's going to take some getting used to living with a chronic disease. This is not something you beat, it's something you live with, find a way to make peace with it.

This will take time and practice.

When RA was settling into my bones, it would take hours each morning before my hand could form a fist. I was training shotokan karate at the time and certain I could fight with my "warrior" outlook, so I'd force myself to make a fist ten times over on each hand, crying my way through the pain and the uselessness of my body. In the end, it didn't make a difference, it still took my hands hours each day to become useful.

The right medicine makes all the difference. Now my fingers once again fly over the keyboard.

As one of my doctors put it, finding the right meds in the right amount for the right person is as much art as science. Sidenote: some of your meds may make you seriously sensitive to the sun, you need your next cool tennis outfit to be more along the lines of a burqini as opposed to the current ones that show off your assets. Other side note: I'd totally buy one from your line, though maybe you'd send me one as kind of a 'thank you for the inspiration, Kim' kind of thing.)

But back to those meds- I sincerely believe Western medicine is your very good friend. Which is not to say you shouldn't explore diet or exercise and other alternative options, but don't dis the drugs.

Screw your lousy health insurance plans their direct mail pharmacy, getting your meds at Costco will save you money. I'm not sure how they manage to sell my meds at a lower cost than my health plans, but they almost always do.

You may feel like you're on a downward spiral and will never get back up. You may cry about the end of your life as you know it and as you cry, you'll notice that your nose is runny and snotty, but you aren't really producing tears and then you'll be even sadder. But you know what? It gets better. I'm living proof!

BTW, here's an uplifting piece about my autoimmune journey at the fab website, ChronicBabe. Welcome to the club.

Need more advice Venus, I'm just a tweet away.

*Disclosure: I only wish they were paying me. If Venus does not accept their offer to be a spokesperson (they can finally make eye drops sexy!), I'd like to be next in line for the job.

7 comments:

ChaosRu said...

Wow, Had no idea! I worked on research for Sjorgren's Syndrome several years ago! So glad you are doing much better.

bichonpawz said...

I can relate to this!!! I have SS, RA, and Lupus...along with Fibro and CFIDS. Boy...I sure can relate!!

emily @ the happy home said...

oh, my gosh. i couldn't imagine being an athlete with SS, or any autoimmune disorder. first & foremost IS to find a good rheum-- one that believes that the pain and isn't all in your head. it's amazing how many doctors (like my last one) specialize in autoimmunes and yest still don't believe their patients...

Susan Bearman said...

Great post, Kim. I hope your health only gets better.

Naomi said...

It's really frightening how most women seem to have some kind of autoimmune or thyroid condition. Why? And why does pretty much every medical issue have the same initial symptomology? SO vexing.

RL Julia said...

My uncle has SS and we think my grandmother might have had an undiagnosed case of it. Had no idea you too. Hope that your diagnosis didn't take the ten years (and multiple other/wrong medical interventions) it did for him! Here's to good health!

Wisconsin Mommy said...

Kim - I had no idea. I'd love to see you be their spokesperson...you do more each day than most "healthy" folks I know. You'd be inspirational!

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