Professional Patient

Patients for a Moment: Humor Round-Up

Hello! My life has been a lot sideways, lately. But I finally have a healthy-enough moment that I can use it to post something.

Patients for a Moment is a weekly round-up of blog posts written by people like you and me - patients fighting through one crazy illness or another.

The week of May 5, Chronic Babe hosted PFAM, with all articles focusing on this question:

What's your most laugh-out-loud illness-related experience?

We can all use a dose of funny, so check these great articles out.

The Flexibility to Think Differently

One thing that chronic illness has blessed me with - the freedom and flexibility to look for solutions that fall outside of what's "normal".

It's really NOT fun when, early in a chronic illness, you have no choice but to find new solutions. Too tired to work 40 hours per week? Part time will have to do. Too tired and sore to take that rock-climbing vacation? A stay-cation is the only alternative on short notice. Can't bend down to pick up your child? Time to sit on the floor with them. No one likes having to make these choices, especially when we feel like our illness is forcing them on us.

However, with years of practice, I think this experience teaches us to constantly problem-solve. And to think "outside the box" (sometimes, just out of sheer desperation). And to bounce back after any kind of short-term failure (if solution A doesn't work as we hoped, we have to dig in and find solution B, C, D...) That's how I have wound up being the auntie who sits on the floor with toddlers (my arms can't pick them up), adding wide-angle side mirrors to my car, and only working 3 days per week (and no more than 6 hours per day). 

This mindset is helping me think through two major problems right now: getting pregnant (no luck so far), and trying to vacation the way my husband likes to (spending 12 to 16 hours per day sightseeing, mostly on foot). To solve the pregnancy problem, I could try somewhat standard solutions like IVF. Or I could adopt. But I've also considered slightly stranger options: using a surrogate or trying herbal medicine and acupuncture. To help my husband vacation without me slowing him down, I could get a motorized mobility scooter (it would help some), or better yet, we could start traveling with other friends or family as part of a group - so there's always someone ready to go pound the pavement with my husband (even if I am still in the hotel, sleeping). I would never have been as open to either of those solutions if illness had not been in my life, forcing me to try, try again. 

Remembering to Take Your Meds

If you have brain fog and/or a complicated medication schedule, how can you remember to take your meds - on time, every time?

Write out your ideal medication schedule - what to take, and when

It all starts by knowing what you should be doing every day. Sit down and write out your schedule for a typical day - mine looks something like this: 

8 am - take x, y, z 

3 pm - take yy

8 pm - take zz, z, y, and z. 

Base this on a "normal" day - for me, my ideal schedule is based on weekdays (when I go to work). 

If you aren't sure what you are supposed to be taking at what times, go back to your doctor and ask. Important questions include - How many times a day? Morning or evening? Before or after a meal? Can I skip doses? What should I not do when taking this medicine? (That last question helped me learn that I should take my antidepressant doses at least 6 hours apart - taking them closer together could cause seizures). 

After you know your ideal pill schedule, you need to remember to follow it. Some tips and tricks:

Use a checklist or notecard to track your progress each day

Photocopy your medication schedule. Each day, take a copy of the schedule and place a checkmark next to each medication as you take it. (You can also do this on your computer.) This will help you remember what you have already taken and what you still need to take. You can also confirm that you are taking meds at the right time.

Every day, I do something like this. I use a 3 by 5 card and jot down the date and the time and name of any meds that I take. Then I place the 3 by 5 card in a plastic 3 by 5 card storage box. As days go by, I accumulate more and more completed cards. If I get confused on a particular day about what I should take or when, I can look at previous days' cards to remind myself. The repetition of writing down things like "3/15: 8 am: Wellbutrin, prednisone 7 mg, Advair" every day helps me remember my routine. Keeping a daily record of your medications is also helpful when you are making changes to your routine (adding or stopping a medication). And it can give you a record you can refer back to when filling out disability applications or preparing to visit a new doc. You have a record of what meds you have tried for problem x and how long you have been on them.

Add pill boxes

Many people also love to use pill boxes to map out their day or week's pills. When I was taking pain medication regularly (every 4-6 hours), I used a 4-compartment plastic pill organizer with the labels morning, noon, evening, bedtime. I filled up the box in the morning with my full days' worth of pills. Then for the rest of the day, I could concentrate on taking the pills and not worry so much about whether I had the right doses. Similarly, some people get massive pill boxes/sorters that hold a week's worth of pills. They fill the box on a quiet day - maybe a weekend day - and then simply take the pills for the rest of the week. You can even get a 7-day pill box system that includes four separate compartments within each day - so you can map out morning, noon, evening, and bedtime doses for each day of the week. (this also comes in a flat tray version). 

Remind, remind, remind

If remembering that you need to take medications in the first place is the problem, there are a variety of helpers. You can put post-its on your computer or your bathroom mirror that remind you of which pills to take at which times. You can leave yourself a voice mail message (at home or work) that tells you what pills to take and when... just play the message each day to remember. You can set alarms on your smart phone. You can use a program like Outlook and set up individual appointments in your calendar to remind you to take the med. Outlook will even give you an on-screen warning 15 minutes before the time of the appointment (i.e., the time that you need to take the medication). 

There are also fancy watches that will let you set up to 12 alarms a day to remind you to take your pills; vibrating pill boxes with built in electronic alarms (up to 4 a day); and new services that will phone, email, or text you every time you need to take a pill (these often require a monthly paid subscription). Samples of the reminder service include BlueberryRx, On Time Rx, and FreeRxReminder (which is free if all you require is text reminders). 

More tips and resources:

15 Questions to Ask Your Doctor About Your Medications, from about.com

Top 5 Ways to Manage Your Medications, from about.com

Managing and Remembering Medications, from the bipolar community on About.com. Includes some inventive ways to organize yourself and to motivate yourself to take your pills - like using a spinning spice rack to hold bottles, and having a friend pay you every time you remember to take a dose. 

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. 

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.  

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. 

Caught in the No Diagnosis/No Treatment Purgatory

My lack of posts lately has probably clued you in to the fact that I feel terrible. And have felt this way for several months now. Unfortunately, I am caught in the limbo of having no diagnosis of my problem yet... and thus almost no treatment for it, either. 

My tired, weak, shaky, tingly muscles could be signs of neuropathy, myopathy, or some other neuromuscular problem. And my docs are wisely waiting to know what I have before they start prescribing treatments to improve my situation. It's important they wait until they are certain, because treatments for my suspected problem or problems vary widely. If I have small-fiber peripheral neuropathy secondary to my Sjogren's Syndrome, taking a higher dose of steroids may help. However, if I have myopathy from taking steroids in the first place, taking a higher dose of steroids will only make things worse!

So I wait, and take the occasional dose of Advil or a mild muscle relaxer in hopes of getting a little relief.

If we can ever figure out what I have, then I hope to get back to a regular posting schedule. 

Learn more about small-fiber neuropathy:

Small fiber neuropathy: A burning problem, Jinny Tavee, Cleveland Clinic Journal of Medicine. 

Small fiber sensory neuropathy, from Johns Hopkins Medicine.

Learn more about myopathy:

Myopathy information page, National Institute of Neurological Disorders and Stroke.

Corticosteroid-induced myopathy, from eMedicine. 

More Helpful Tips on Coping with a Cervical (Neck) Collar

George Flanagin's ACDF portal has excellent tricks and techniques for coping with life in a neck collar. I especially can relate to his explanation that once your collar is on, your vision shrinks to what is directly ahead of you. It IS a little nauseating. I used to get seasick trying to shop at the grocery store or somewhere like Target. I tried walking down the center of a row and looking side to side... a recipe for dizziness and sour stomach. I finally learned to stand against one side of an aisle, with my back to the shelves, and look across at the items on the other side of the aisle. I would side-step my way down the row, then switch so my back was against the shelves on the other side of the aisle, rinse, and repeat. I'm getting tired just thinking about it now!

Best Hobbies for Time Spent "Resting Up"?

I am getting sick with a cold, and I've recently had a higher than usual level of exhaustion, muscle aches, brain fog, and new neuropathies. So I know I need to rest - tonight is not the night to go shopping, vacuum the house, do my homework, or tackle the 4 loads of laundry that are waiting for me. 

I've been in this "resting up," "trying not to get over-tired" mode for a few weeks now. And I'm sick of it! Bored silly. And endlessly frustrated at all of the things I've had to ignore while I try and get my energy back. 

How do you like to spend time when you are too mentally and physically tired to do anything but take it easy for a while? (But not so tired that you are sleeping all the time?) TV gets to be too much. Reading actually can be too physically demanding for me sometimes - the effort of holding the book and turning the pages can be intense if my neuropathy is acting up. And my balance is a little wobbly, so I'm not doing much tai chi at the moment. 

What's a peaceful, happy, and engaging way to while away hours while you are resting? Knitting? Scrapbooking? Writing letters or emails? What works for you? I need ideas!