Professional Patient

My Top After-Surgery Must-Haves

Last week, I had laparoscopic surgery for endometriosis. It's a relatively "minor" surgery, as far as surgeries go. And it reminded me all over again that any surgery - no matter how small - is a big deal. 

There were several things I relied on heavily last week to get me through the first phase of recovery:

1. Yoga pants. Soft knit pants with a wide elastic waistband gave my tender abdomen some support without pinching or pressing. And I could wear them straight to bed without changing when I was really, really tired.

2. Easy to digest food. Apparently, having any type of abdominal surgical procedure is enough to tie your digestive system in knots for a day or two. Powerade, hot tea, brothy soup, and jello helped me get through the first few meals. It also helped alleviate the scratchy throat I had post-op.

3. Extra pillows. My body moved strangely for a while after surgery to work around my tight abdomen. Extra pillows helped support all my achy parts so I could get some sleep.

4. Music, magazines, and books (in that order). I can't concentrate on something as complicated as a book or TV show right after surgery. Music and magazines gave me a way to fill up a few minutes (or a lot more). When I started feeling a little bit better (tired, in pain, but a little more human), books were a great way to pass the time.

5. A friend to talk to. No matter what, I get a little depressed after any kind of surgery. Last week, it happened once I started feeling better but didn't have any "get up and go" yet. Surgery forces you to detach from your life for a while - I didn't go to work, didn't cook or do other typical household chores, etc. And I found myself wondering if I really liked any of my "normal" life enough to go back to it after I recovered. Talking to friends helped remind me why I do want to get back in the saddle - there are people worth seeing and fun to be had.

6. A trash bag and some medical tape. To cover up my incisions while I showered. (I stayed out of the shower for about 48 or even 72 hours, then taped up to take a real shower and wash my hair.)

7. Having important items available at waist level. Bending forward from the waist still doesn't feel good (a week later). Having my clothes, food, dishes, etc. where I could easily reach them helped me be more self-sufficient and pain free while I recovered.

8. Advil or other over the counter pain medicine. My docs sent me home from the hospital with Percocet and some extra-strong prescription Advil. I switched to regular advil after a few days to help transition to being medication-free. 

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

Accepting that You Might Be Like this Forever

I don't know about you, but I sure like to stick my head in the sand. If I start feeling worse - because some new problem shows up - I try and push through it. Rather than slow down to adjust for my new symptom or issue, I plow ahead and live my normal life. And feel worse every day that goes by. 

Maybe I do this because of denial - I don't want to admit that I'm feeling worse. And I sure don't want to restrict my activities because I'm feeling worse. (That sounds like giving up and giving in.) It could also be that I've put too much faith in the power of positive thinking. If we think a problem is solvable or temporary, we stand a better chance of overcoming it.

But this denial/ignoring/hoping it gets better someday soon can limit your ability to enjoy life to the fullest right now. There is a certain kind of freedom and relief to accepting the reality that you are sicker than you used to be. I've felt horrible since late September, and powered my way through the holidays, fervently hoping that it would all be over soon and my doctors would figure out how to make me feel better again. Ha, ha. The wheels of medicine grind extremely slowly sometimes. So around new year's, I said OK, this is crazy, something has to give. I have to make adjustments. 

I stopped the 90-minute exercise class that was making me feel awful every Thursday afternoon, and I stopped my volunteer work. And it has been such a relief. I can now usually make it through my work week OK, rather than feeling completely drained by Wednesday afternoon. And I am spending what was my volunteer time resting at home. With less physical strain comes less emotional strain - I know I can meet my commitments now, and I'm not constantly dreading having to call in sick for my volunteer time. Exercise makes my symptoms worse, so skipping my tai chi class has been a good thing indeed.

Adopting this new "let's deal with how I'm feeling now" mindset has helped my sex life, too. My husband and I were both kind of waiting around for me to feel better rather than figuring out how to have sex in a way that embraces my current limitations (muscle pain and fatigue). We had settled into this uneasy stalemate where no one tried to seduce the other person. We just hoped the fun and fabulous sex we used to have (in the days "before" the muscle pain) would magically reappear someday. Well, that is no way to live. By accepting the idea that yes, I might always feel this lousy, we have started a new period of experimentation. It's a little awkward, but it has turned out to be a lot of fun. Our sex life is probably the best it's been since we were horny 20 somethings! With an emotional connection that can only come from working together to solve a major problem. 

Accepting what is happening now in your life is not easy... I am very sad to think that my life is getting a little smaller again because I feel so sick most of the time. Accepting now means grieving over the loss of how you used to be. It's depressing, too - no one wants to be sick, tired, etc. for the rest of their lives... being this way forever feels like a prison sentence.

But I have to remind myself - this might get better when I least expect it. And then, I can make my life larger again.  

Tips for Fitting, Cleaning, Wearing Your Miami J Collar

Absolutely excellent, illustrated information on wearing your Miami J cervical collar, from the Ohio State University Medical Center patient resources: Wearing A Cervical Collar (PDF). If you lost your patient guide booklet (which may or may not have come with your brace), this article is a terrific substitute. 

This PDF includes especially valuable information for caretakers... so if someone is helping you deal with your brace, be sure to share this info. with them as well. 

Eating Local

I sometimes wonder... is eating locally produced food better for my health? Because the food is fresher, and picked at the peak of ripeness? 

At work, I am part of an effort to promote local agriculture/food options as a way to save the planet and enjoy fresher food. I have started mapping local options - farmers' markets, dairies and creameries, meat producers, farms, and CSAs - in the Baltimore-Washington area. Thought I would share: view Baltimore-Washington community supported agriculture map (hosted by Community Walk).

If you have something you would like to add to the map, leave a comment. I will continue to develop the p throughout the year. Thanks!

Remember to Look After Your Entire Body, Not Just Your Illness

Today I got an important reminder - routine screenings and ordinary doctor appointments are very important. When you get regular care for a chronic condition or serious injury/illness, it's easy to get tunnel vision and think that nothing else (physically) matters. You might forget to check your cholesterol levels, get your annual pap smear, or do other routine medical care. 

Today I was reminded that medical issues can arise anywhere in your little old body, when you least expect it. I went to the gynecologist to follow up on menstrual irregularities, and the transvaginal ultrasound revealed a cyst on my left ovary and a cyst on the right. The one on the left looked so odd and potentially menacing that my gynecologist wants me to see an oncologist immediately for further evaluation. 

So remember to care for all of you. And if your doctor finds something new (not related to your chronic illness) that might require further tests, make sure to do them promptly. It would be awful if you spent your life vigilantly and expertly managing your chronic illness, only to have some other problem sneak up on you unnoticed and get out of control. 

Dry Mouth Resolutions for 2010

A few new or different things to help your dry mouth stay healthy in 2010.

• Once a week, brush your teeth using only water. Toothpaste gives your mouth a smooth feel… which makes it hard to locate the rough patches of plaque in your mouth. Brushing without toothpaste gives you a chance to find the corners of your mouth that may need a little extra help.
• Use a straw when drinking anything sweet. The straw keeps the drink from contacting the front of your teeth.
• After brushing, wipe your tongue with a towel or washcloth to remove toothpaste residue. This can reduce irritation and can help keep toothpaste-tinged saliva from accumulating on your lips.
• Ditch the tartar-control toothpaste. Studies are increasingly showing that tartar control ingredients are more irritating and can contribute to contact stomatitis around the lips. 
• Remove food from between your teeth after meals. This reduces the risk of decay and keeps breath fresher. Use a Proxabrush, stim-u-dent, toothpick, or similar tool.
• Do more by doing less. My periodontist tells me that if something hurts in my mouth, I need to treat it very gently, or skip that spot altogether for a day or two. Which seems backwards to me – I always want to give more attention to sore spots.
• Try a soak before brushing. Some dentists recommend that you use your mouthwash 15 to 30 minutes before brushing. This lets the mouthwash start to break up the plaque so that brushing can remove it more easily. My periodontist also recommends that if you use a proxabrush or similar tool to clean between your teeth, you should dip it in baking soda or Biotene mouthwash first, which will help deliver it to the surfaces between teeth.
• Ban the brushing motion. If you use a power toothbrush, just say no to the standard brushing approach. Place your toothbrush on one tooth, let it sit for a few seconds, then lift it and place it on the next tooth. And so on. If you’re anything like me, you may find that this helps you brush every tooth – I was actually missing a few. 
• Try Recaldent/MI paste. This is the new wonder-tool that periodontists and dentists use to recalcify sensitive, cavity-prone teeth. Read more in this article on minimally invasive dentistry from the Academy of General Dentistry website. 
• See a periodontist before you have any gum problems. Make a least one appointment to learn the proper techniques for cleaning troubled teeth and gums. It may save you a periodontist visit later on.
• Raise the moisture level of your mouth. Try a humdifier, use a drug like evoxac, or try a fish or flaxseed oil supplement. You will be more comfortable.
• Trade your floss for a waterpik. Floss can cut delicate gums. Waterpiks work just as well.