Monday, August 31, 2009

No crutch for me, please.


The Gorman household is officially pacifier-free!
***
Deirdre was never a die-hard fan of her paci, but a few months back, she reacquainted herself with the binkster and used it to fall asleep during nap time and at night. She would suck on it for about five minutes, let it fall out, then fall dead asleep. She wouldn't need/use it again until the next time she was in her crib. I wasn't worried about weaning her off until her 1st birthday (or even later), but about a week ago, she started throwing the paci out of her crib before falling asleep. I figured that was a signal that she was pretty much finished with the thing. So, on the second day she threw out the paci, we just left it where it fell - and never put it back in her crib.


I fooled myself into thinking that those five little minutes with the pacifier weren't that important, but apparently, they were quite precious to Miss Deirdre. On that third day, when she realized that Mr. Paci wasn't anywhere to be found, she wasn't very happy. During the couple of days that followed, the first 15-20 minutes of her naps were anything but tear-free, and she even skipped a few because she just couldn't fall asleep. But, all in all, the little lady has done pretty well, and now goes down without too much fuss. She doesn't quite jump into bed like she used to, and she certainly takes a little longer to fall asleep...but I'm happy to say that the worst seems to be over. Thanks to my good friend Liz for encouraging me to end the paci-fest while it was still early.
***
Realizing that Deirdre has had to re-learn how to fall asleep without the pacifier makes me think of the "re-learning" I had to do when I made the decision to stop working full-time. Because the stress and long hours of full-time work was exacerbating my lupus activity to the point where my health was severely deteriorating, I made the decision to resign from my job. I took a part-time, work-from-home position at the same company. While I know I was fortunate to a) have the option to take a pay cut and b) have a part-time position available to me, I can't tell you how difficult it was to emotionally break free from my full-time work. I enjoyed my job, loved the people I worked with, and felt good about all I had accomplished. My identity was wrapped up in my job - and I underestimated the feelings of security, comfort, and familiarity that I derived from working full-time. My job helped shape me as the independent, confident woman I was; stripped of my armour, I wasn't quite sure what would be left.
***
Could I still be that strong, accomplished person? Would I be able to relearn how to be "me" without my work? The answer to both questions is yes. Even after quitting my part-time job two years later, today, I can proudly say that I've licked them both.
***
Having published a book, birthed a baby, and maintained my health during both processes - I couldn't feel more accomplished. The security blanket of working full-time is no longer needed. In fact, I think I might feel a little suffocated by working, now that I've been away from it.
***
What a fabulous feeling not to need that crutch - I wish I could explain to Miss Deirdre how liberating it is not to need something "external" to feel good, confident and secure. I know she'll come around...she's practically there. Before I know it, she'll be jumping into bed, without even thinking about that silly old paci. Goodness knows I don't give much thought to that lost commute every morning. How long did it take me not to miss that? About a week? If that!

Friday, August 28, 2009

Oh, my aching back...answers to the quiz!

Here you go - the answers to Wednesday's quiz, taken from an article in Vitality magazine. Enjoy!

1) B - 12 million. Turns out 8 in 10 people will have back pain sometime in their lives.

2) C - spinal cord. The spinal cord is part of the central nervous system. The brain is the other part.

3) C - damage to cartilage and spine. When osteoarthritis occurs in the spine, the cartilage wears down and the space between the vertebrae decreases. The spinal nerves can become pinched, causing pain. As the condition worsens, the person may feel numbness, weakness in the back, muscle spasms and stiffness.

4) D - all four choices. Also important, according to the NINDS (National Institute of Neurological Disorders and Stroke): Don't slouch while sitting or standing. Don't stand or work in any one position for a long time. Don't smoke. Sleep on your side with your knees drawn (which was the other small piece of advice my nurse gave me!). Lastly, try to reduce stress in your life that causes muscle tension.

5) C - disc material has bulged into the spinal cord. Discs are made of tough, elastic tissue. They are found between each of the vertebrae of the spine. The elastic tissue acts as a shock absorber for the vertebrae.

6) D - all four choices. The most common cause of a slipped disc is aging. The elastic tissue of the disc breaks down and weakens with age. The ligaments holding the disc in place also weaken as you grow older. Some people are more prone to having a slipped disc, so a sudden twisting or sudden strain on the back may result in one.

Wednesday, August 26, 2009

Oh, my aching back!

Got back pain? Take this recent quiz from Vitality magazine to learn more!

While back pain doesn’t have to be a direct symptom of lupus, I know first-hand that spending countless days in bed can make the issue all too familiar. I remember consulting my doctor on severe back pain once, and was amazed that once I employed a trick or two that the nurse recommended (like turning on my side and swinging my legs out to get out of bed…), the pain in my lower back all but disappeared. Wish the pain in the rest of my joints could have been remedied so quickly!

1) How many doctor visits each year are because of back problems?
A - 5 million
B - 12 million
C - 20 million
D - 22 million

2) The spinal cord is an extension of what?
A - pelvis
B - legs
C - brain
D - arms

3) What happens when osteoarthritis occurs in the spine?
A - it damages the cartilage
B - it damages the joints in the spine
C - A and B
D - none of the above

4) What can be done to prevent back pain?
A - maintain a healthy weight
B - exercise regularly
C - lift objects while bending at the knee, not the waist
D - all of the above

5) One of the most common back injuries is a slipped, or herniated, disc. What does this mean?
A - a spinal disc has moved down the spine
B - a spinal disc has twisted
C - disc material has bulged into the spinal canal
D - none of the above

6) What causes a slipped disc?
A - a strain on the back
B - age
C - sudden twisting movement
D - all of the above

The answers (and a bit of an explanation) to come in Friday's post!

Monday, August 24, 2009

Whoa! Despite Lupus hits the big time!

How cool is this? Guess the article on the front page of my hometown paper caught the Lt. Gov's attention! Banner Graphic reporter Shannen Hayes did a phenomenal job of getting Despite Lupus front and center. Here's another article (again, on the front page) from the Friday before. Thanks, Shannen!

Wednesday, August 19, 2009

Spread the word and act now!

The folks at the LFA asked me to pass this on. It will just take a minute, but it will make a huge difference! Just remember to make the call between 9am and 5pm. Thanks!

Lupus Foundation of America Needs Your Help!!

Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

Go to http://capwiz.com/lfa/home/

Click on the link "Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act," enter your zip code in the box called “Call Now” and click on the “go” button.

You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call. Please ask your family, friends and coworkers to call on your behalf as well.

Here's what the bill do:

*Establish a cap on prescription drug costs. The bill establishes a $200 cap on the amount a person would pay for any one prescription, and a $500 cap on the total amount an individual would be pay for all prescriptions in any given month. These caps apply to all public and private insurance coverage, including Medicare prescription drug plans.

*Create an exceptions process for specialty drugs. The most expensive prescription drugs in the Medicare prescription drug program are on specialty tiers and are eligible for beneficiary exemption requests. For all other Medicare-covered prescription drugs, a beneficiary can request an exemption to allow them access to needed drugs. High-cost, specialty drugs can be difficult to access, and this bill will allow any beneficiary to request any necessary prescription drug through the exemption process.

*Require MedPAC studies on discrimination and cost-sharing. The first study will review Medicare prescription drug polices (under Medicare Parts B, C, and D) to make sure they do not violate non-discrimination rules. The second study will examine the impact of prescription drug cost-sharing on beneficiaries and their health.

Monday, August 17, 2009

It's the little things..

I had the opportunity to attend 3 separate lupus events this past week - putting me in contact with many lupites that I hadn't met before. We shared a lot about our experiences with the disease - our coping strategies, frustrations, needs - in addition to the many blessings we've experienced, like supportive family and friends, understanding co-workers, and competent, responsive doctors.

I know I have a lot to be thankful for, and not only because I'm living well, despite lupus. With my disease under control, there are so many little things that I no longer have to worry about. Here are just a few of the annoying considerations that I have to keep in mind when my disease is active - reminding me to maintain my current state of health and wellness - at all costs!

1) Medicines that require a plan: Many of my past medications have forced me to eat, drink, or rest (or NOT eat, drink or rest) at certain times...and when you're on more than one medication that has such requirements, it can become almost impossible to do any of the three! Thank goodness I'm not juggling any of the above - my present medications are streamlined and straight-forward - and I'm going to do everything I can to keep it that way.

2) Avoiding any and all sun exposure: This one was a real bear. I hated the stress and anxiety of finding a parking spot close enough to avoid unnecessary exposure when shopping, having to wear 3/4 or full length long sleeves, even on the hottest days of the year, or having to wear a hat with every outfit. Don't get me wrong - I still limit my sun time. But with my disease activity in check, my photosensitivity seems to have diminished significantly. I'm no longer worried that a few minutes in the sun will trigger a flare - and that's a big relief. I have to be careful, but not overly cautious. And when it comes to the limitations of a chronic illness, that's a big difference.

3) Choosing chewy: One of my least favorite joints to flare was my jaw. I hated having to plan what I was going to eat based upon what I could chew...or not chew. Tea, soup, bread...those were the easiest things to eat. A carrot stick or a granola bar? Forget about it! Remembering how much it hurt to chew way back then makes me grab for the crunchiest apple I can find today. Here's to a fully-functional set of choppers!

4) Always searching for an assisted pathway: I now know that on days when my joints were killing me - I should have used a cane. Instead, I hobbled around, grasping onto chairs, tables, doorways, handles, and anything else that would help ease my way. It was a royal pain (pardon the pun), and it's so nice not to even consider that getting from here to there might require a strategy.

Friday, August 14, 2009

How can I help my (friend, sister, mom, daughter, uncle)?

I've been asked that several times in the last two weeks - what a wonderful question to come from family members and friends of someone with lupus!!

While I certainly don't have all of the answers, and I can only speak from experience, here are three thoughts on the subject of helping someone with lupus. Lupites - feel free to chime in. I welcome the input.

1) Realize it's a process: Learning to deal with lupus doesn't always come easily (come to think of it, does it ever?), and it doesn't happen overnight, so depending on where your loved one is in the process, you may need to adjust your level of help, intervention, assistance, etc. It may change week to week, or even day to day (just like the disease itself), so just take the cue from your lupite. For instance, if they want to talk, be ready to listen. If they don't want to talk, don't push. They'll come around when they're ready (and feeling better!)

2) Believe they have the power to do the right thing: I can't tell you how much it helps when someone says to me, "I know you're doing everything you can to control (beat, deal with) your lupus," rather than, "You shouldn't be doing *blank*." It gets me hot under the collar just thinking about it! Try your best to instill confidence in the person you're trying to help - if you believe they can make the changes necessary to live well with their disease - it will allow them to believe they have the power to do so, too! Here's one of my favorite quotes - taken from a book by Dr. Gordon Livingston, "And Never Stop Dancing" - included in my book:

"To assume that people have within themselves the capacity to decide what is best for them is a vote of confidence."

3) Help them focus on the now: There were plenty of times during my worst flares when the pain was so excruciating -I didn't know how I was going to make it through the next hour. In fact, I can think of a half-dozen times when I had my doubts about getting from one minute to the next. These were some of my most desperate times, and I can tell you that my husband, my sister, and my brother-in-law, in particular, were paramount in helping me focus on the here and now, and not one minute more. Whether it's getting through the present flare, holding out until the next doctor's appointment, or counting down the minutes until they can take their next dose of medicine - helping your favorite lupite get through those last few unbearable weeks, days, or moments will make you a hero!

Wednesday, August 12, 2009

Inventory time

I'm thinking of putting a new twist on my chronic control spreadsheet. I've mentioned the success I've had in the past of tracking, charting and listing the factors associated with my disease - symptoms, medications, doctor visits, etc - realizing very quickly the value of putting all of these things down on paper. Through my chart, I was able to create a visual picture of my illness - making conclusions that I might not have been able to make otherwise. But now that I'm pretty darn healthy, I no longer need to create a picture of my illness, but, rather, my wellness. So instead of listing my symptoms (which are practically non-existent right now - yippee!!) down one side of the page, I'll list things that can contribute to my wellness.

Here's a preliminary list of the items that would be on my daily to-do's in order to continue to live well:

--In bed by 11pm
--Exercise 15 min a day
--Eat more fruit than sweets (I am the original cookie monster)
--Start my nap before 3pm each day
--Get at least an hour and 30 minutes rest
--Spend less than an hour on the computer
--Check my email three times or less a day (just a thought, since I'm a bit of an addict when it comes to checking it. It may make me a little less frenetic throughout the day.)
--Walk with the family

I figure if I have this list of things to check off each day - items that I KNOW contribute to my good health and well being - I'll be more apt to do them. I'll keep you posted on how it goes. In the meantime, let me know what items would be on your wellness spreadsheet. I'd love to hear it!

Monday, August 10, 2009

Not-so-random-acts of kindness

Over the course of my 8 1/2 years with lupus, I'm sorry to say that I've been incapacitated on more than one occasion. Stuck in bed, unable to work, (practically unable to walk, for that matter), I've had plenty of opportunities to ask for help. But I've never been very good at reaching out for a helping hand - but my friends and family have always been really good at giving it, nonetheless. Here are just a few examples of the things people have done - without me even asking. Imagine if I'd been a little less stubborn (see Friday's post...) about asking for help - I would never lift a finger!

-- I was out of work for almost a month when I was first diagnosed - and I was completely out of commission. I was too sick to do anything - read, watch television, even talk on the phone - so you can imagine that the last thing on my list was checking my voicemail at work. I was really dreading my first day back - imagining just how many messages I had piled up. I knew my co-workers had probably taken care of everything that was urgent, but I just hated the idea of listening to all of those messages, trying to figure what had been dealt with, what I'd missed, etc. I planned to do tackle my voicemail the weekend before my first day back, but when I logged into my voicemail - it was empty!!! My co-worker Tracey had already taken it upon herself to clear out my voicemail. There wasn't even one message left - instantly relieving me of the guilt and anxiety I already felt from being out a month. Thanks to her, I had nothing hanging over my head - nothing on my to-do-list - and I showed up for that first day back more relaxed than I had in a long time. It had been hard enough to miss work - but now, it was as if I hadn't missed a thing! Thanks, Tracey!

--After a few years with lupus, it became obvious that when I was in a flare, I was pretty much useless. I was either in bed sleeping or in bed feeling crummy - not capable of doing much for myself, least of all cook or clean. My husband and sister usually took care of things for me - but on one particular weekend, they were both going to be out of town. I'd be on my own. Of course, I didn't mind - I just planned on being in bed all weekend. But my sister felt that I shouldn't be alone. So she drafted my good friend (and professional chef) Jodie to come and keep me company. And, boy, was she the best company! She came over early on a Saturday morning, cooked an entire week's worth of food, cleaned the entire kitchen from head to toe (and did it need it!), and left the entire house feeling warm, comforting and alive. I'd never felt so good. I still remember falling asleep that night - relieved that my fridge was stocked, relieved that my house was clean, relieved to know that I had such a good friend who would just come to the rescue, without me even saying a word. The feeling of worthlessness I'd had because I couldn't cook for myself or clean my own house was immediately gone - what a relief (and a blessing!)

-- When my sister was pregnant with her first baby, I insisted on throwing a baby shower for her. I really wanted to do it - and although I definitely wasn't feeling my best, I figured that with the help of a caterer, a cleaning lady, and my mom co-hosting, I'd be able to handle it. My friend Maureen, also a friend of my sister's, planned to attend, and she would be coming in from out of town for the event. She was a guest - but she sure didn't act like one! She cleaned the house when my housekeeper failed to arrive, she helped set-up for the party, organized the favors, food, and drinks - and acted as though she hadn't lifted a finger once all of the guests arrived. My mom, too, was a huge help - but it was Maureen's unexpected helping hand that made the weekend a hit, and kept me feeling as good as possible. I don't know how I would have done it alone!

I have so many more examples - my husband Johnny deleting all of the spam emails in my inbox after I'd missed yet another 3 weeks of work, my friend Susan bringing over dinner just this past winter, and my girlfriend Angela spearheading my initial book signings, not only getting me (and my book) off to a running start, but also ensuring that I didn't get sick trying to do too much - so I promise to try and do a "kindness" post every so often. Who doesn't want to hear about a not-so-random-act of kindness? Let's hope it catches!

Friday, August 7, 2009

Learning to com..comp...comprom...compromise. There, I said it.

I was putting together some training materials for an upcoming seminar that my husband's company is putting on, and the subtitle of the class caught my eye: "My Way is not the Only Way." Really? You could have fooled me.

I'm pretty sure that from the very beginning (Day Zero in the life of Sara G.), I had perfected the art of being stubborn. My parents would agree, my husband would concur, and, no doubt, one day my daughter will say the same - I've got the whole headstrong thing figured out. I even think I've blogged about this attribute before, because when I looked into my file folder of past blog pictures - I saw a big ole' mule photo staring back at me. Hmmm - I wonder what that could have signified?

Truth is - my stubbornness has actually come in handy from time to time. I've spent many a visit to the ER, stubbornly waiting at the little sliding glass window, looking pitiful so that I could be seen as quickly as possible. (I realized on one of my first visits that when you don't look sick and you're not bleeding - you get pushed to the back of the line. But the pain of a massive lupus flare is not a back-of-the-line kind of issue, wouldn't you agree?)

I would also say that my stubbornness in not letting lupus get the best of me eventually led me to where I am today...but it would be unfair of me not to mention that it was that same stubbornness that kept me from acknowledging that sometimes, you just can't do everything you want to do, which, of course, means that your way may, surprisingly, not always be the only way.

Compromise is a very difficult thing - especially when you're stubbornly working against yourself - refusing to accept that the things you think should be possible in life with lupus just aren't. Learning to give yourself a break, let something slide, or acknowledge that you can't do something isn't only smart, it's a sign of maturity.

Today, I can see that ignoring fatigue or acting as though my joints weren't swollen wasn't being tough or strategic. It was being silly and negligent.

Today, I realize that adjusting to life with lupus isn't about giving up. It's about giving in. Just a little. In order to get back. A lot.

Wednesday, August 5, 2009

Lupus is...


Unpredictable, inhibiting, frustrating...to name just a few.

These are words taken from an awareness campaign from the organization "Lupus Is...", dedicated to increasing lupus education and awareness. Check out their site when you have the chance, and click on the pics to the right to see a few of their posters from their awareness campaign. Pretty great, huh?

Their tag line of "Lupus is..." reminded me of where the title of my book came from - which has pretty much become my mantra for living with lupus.

Despite lupus - I'm doing anything and everything I want. What does that really mean, you ask? Here's what it means to me:


Despite lupus, I'm living well.

Despite lupus, I gave birth to a beautiful baby girl 10 months ago.

Despite lupus, I had a healthy, successful, uneventful pregnancy.

Despite lupus, I walked a marathon.

Despite lupus, I wrote a book.

Despite lupus, I can get down on my hands and knees and play with my daughter.

Despite lupus, I've traveled to over 35 countries (and taken an afternoon nap in practically every one of them!)

If I think of any more, I'll be sure to add them. Feel free to add your own in the comments!

Monday, August 3, 2009

LFA Indianapolis kick-off event!

Looking forward to kicking off the LFA-Indianapolis chapter's next support group event. Indy is Despite Lupus' first stop on the Mid-West book signing tour - and we can't wait!

Here are the details to the evening's event. Hope you can make it!

WHAT: Lupus Foundation of America - Indy Chapter
"Despite Lupus: Interview with the Author" - all are welcome!
Q&A and Book Signing - refreshments included
"Patient Only"Support Group meeting to follow


WHERE: United Way Center, Main Office, 3901 N. Meridian Street, Indianapolis, IN

WHEN: Monday, August 10th.
Interview with Author and Q&A from 6-7pm.
"Patient Only" forum (aka Support Group meeting) from 7-8pm.

For more information, feel free to visit http://www.despitelupus.com/ or http://www.lupusindiana.org/.

Contact sara@despitelupus.com with questions, comments, or to RSVP.