Professional Patient

Leaning into the Wind

In a previous post, "Accepting that you Might Be Like This Forever," I bemoaned months of feeling worse. Of feeling trapped. Of having a new problem (muscle weakness and weirdness) that doctors had not yet been able to solve. 

I also noted that I had finally, grudgingly reduced my overloaded schedule to accommodate my new problem and the crushing fatigue that came with it. No more volunteering with Pets on Wheels (I had gotten sicker than the clients that my dog and I would visit), and no more 90-minute tai chi classes every Thursday. 

Somewhere in mid-February, I was blessed with nearly two weeks of feeling pretty darn good. Much less pain, much less fatigue, much more can-do-anything. Maybe this happened because I finally stopped running myself into the ground. Or maybe I just got lucky. (It was probably luck - this winning streak started between two blizzards that dumped 50 inches of snow on Baltimore in 5 days. So I was shoveling snow, ever so slowly, which should have made me feel awful. But somehow I started feeling better.)

I have been chronically exhausted, living with Sjogren's, for nearly 10 years now. And that experience has led me to be conservative with my "good days". To not overdo it, even when I feel great - so I can keep some spoons in the bank for really bad days that are no doubt on their way. 

But coping strategies change, I guess. This time around, probably for the first time ever (since having Sjogren's fatigue), I leaned into the good energy. Really hard. Remember as a child, when you would sit on a playground carousel, or those teacups at the state fair, and if you leaned out into the wind (to the edge of the carousel or teacup), the g-force would overtake you... and it felt like you were weightless, flying... (maybe nauseous, too)? That was such an amazing, breathless, out-of-body experience. And pure joy.

So this time, in my two-week spurt of feeling pretty OK, I leaned into the wind. I jumped into joyous activities with almost all the energy I had. And it was delightful. I'm tapering back down to my normal tired self now. But the bright flash of happiness I felt over the past two weeks should sustain me through the next oh-so-tired period of time. And some of the activities that I was able to start up in my "good energy" window are things I can nibble at during quieter/more tired months, and really sink my teeth into during good energy months. 

Here's to the next good energy month. May it come your way, soon! And may you find a way to fully enjoy it!

**Photo above from subewl on Flickr: http://www.flickr.com/photos/49502985672@N01/243213, by way of Wikimedia Commons. 

Pesky Parotid Lump: Aspiration, Take Two

Someone left a comment asking about how my pesky parotid lump situation worked out.

When I last posted, I was heading to the big university hospital in town for a second fine needle aspiration. The first aspiration had not generated enough material to complete the flow cytometry that my doctor had requested.

My second needle aspiration was interesting and surprising. A pathologist (rather than an ENT) did the aspiration herself. She did NOT use any kind of local anesthetic, because she said that the anesthetic is typically drawn back out through the needle, washing out or hiding the real fluid/material from your parotid. The doctor also did the FNA in stages... she poked me enough to get a decent amount of fluid, then put that fluid on slides and analyzed the slides under a microscope. Then, based on what she saw, she poked me again, put the fluid on slides, looked at them under a microscope, and so on. By doing the FNA in stages, the pathologist was able to make sure she had enough fluid/material to do a proper analysis under the microscope and to complete the flow cytometry.

I think we finished after three rounds. The pathologist drew out as much fluid as she could to make my "lump" shrink down to almost normal size. It was great while it lasted... but within 48 hours, my lump was back to its old size!

I can say with conviction that having a needle poked into your face repeatedly, without any kind of injected anesthethic, requires some machismo. It was not the kind of pain that would make you black out or scream, but it certainly was the kind that would make you jump and say "OW!" Next time, I might ask if a topical anesthetic would help - it at least would not sink into the face. 

Another benefit of having the pathologist do my FNA and analyze it as she worked - she was able to tell me immediately whether she saw anything concerning on the slides. I went home knowing that the pathologist was pretty certain that my cyst was just that... a harmless cyst.

A few days later, the final results came in: not cancerous. Totally benign! Woohoo!

New Lupus/Sjogren's Blog

I just stumbled across Wicked Antibodies, a blog written by "Crabcakes,"  a medical technologist, with a recent diagnosis of lupus and Sjogren's, who has a daughter with MS. 

Good stuff! I often have docs tell me I have "lupus-y" Sjogren's... so it's helpful to read about someone who definitely has both.

E-mail ListServs (Discussion Groups) for Sjogies

There are two long-running e-mail listservs (discussion groups conducted through e-mail) that support patients with Sjogren's syndrome.

The granddaddy of them all is the SS-L listserv. This list is devoted to discussions of medical information - symptoms, treatments, how to get a diagnosis, etc.

The TalkSjo list is for "support and sociability" among Sjogies. See http://www.dry.org/talksjo.html for more information.) This is a place to chat with people who have been through it all, too. 

You can also find online support at Sjogren's World (including a Sjogren's World discussion forum and live chats) and Sjo Girls at Cafe Chronique (including a Sjo Girls discussion forum). 

Below are instructions on how to join the SS-L and Talk Sjo lists. 

To join the SS-List:
Send an email message to LISTSERV@LISTSERV.ILLINOIS.EDU, containing these lines, written just like this:
SUBSCRIBE SS-L ANONYMOUS
END

You will receive a confirmation request from the "listserv", usually within an hour or so of your Subscribe message. The confirmation request requires an "OK" response from you. To make your OK response, use your email program's Reply button, and edit your reply to contain just these two lines:
OK
END

Once you have OK'd the confirmation request, you will receive (within an hour or so) two messages from Listserv with background information about using SS-L. You will also begin receiving email messages as they are sent by list members. If you see no messages for a day or two, then something has gone wrong, and you should try again from the beginning.

Additional SS-L links:

• Change the email address that receives your SS-L messages: http://www.dry.org/address.html 
• Take a vacation from SS-L (temporarily stop receiving SS-L messages): http://www.dry.org/nomailssl.html
• Resume delivery of SS-L: http://www.dry.org/mailssl.html
• Receive a daily digest of SS-L (this is incredibly helpful to limit how many e-mails you receive from the list): http://www.dry.org/digestssl.html
• Unsubscribe from the SS-L list: http://www.dry.org/unsubssl.html 
• Search the SS-L archives: http://www.dry.org/archivessl.html [User name:  archives   Password:  searchme]

To join the TalkSjo list:

To join the TalkSjo group, send the subscribe message first.  The post messages, use the "post message" address.   TalkSjo is a private list, so it doesn't show up in the Sjogren's lists on Yahoo groups.  If you have a yahoo account, you can add it to your yahoo groups once you are already a member. You can unsubscribe any time, or set up a Yahoo account for free that will allow you to change your setting at the yahoogroups.com website.  That's a little trickier though, so start with these addresses.

Post message: TalkSjo@yahoogroups.com 

Subscribe:
TalkSjo-subscribe@yahoogroups.com 

Unsubscribe:
TalkSjo-unsubscribe@yahoogroups.com