I live with lupus.  I work with and learn from people who are living with lupus or other illnesses that often share similar medications, experiences, doctors, and challenges.  I have a library of books, hundreds of files, materials from trainings and conferences, have a multitude of websites listed in my favorites, have worked directly with patients and health professionals, and have participated (at one time or another) in more than 12 social networking sites.  I have lived and breathed lupus and illness for many years, all the while discovering that there is always more to learn.  One would think that I would be bursting at the seams with some common ‘lupus’ sense.  Apparently not.

Do any of you remember, when you were kids, the Highlights® Magazine  you could find at the doctor or dentist office?  You may see them now, if you’re taking your own kids to their appointments.  In this magazine (and now online) , there is an illustrated picture  where you are instructed to find a list of hidden items.  Some are tough to find, but others are right out in the open, thankfully.  I remember being pretty frustrated when I could not finding certain items, only to realize I had been looking at it the whole time.  This post, too,  is about things that appear one way on the surface, but when you look more closely, you will see things aren’t as they should be.

On the surface, you might think that growing a garden and eating fresh vegetables are good things.  You might also think that I always make the right choices,  since I do health support services as a profession. If you look more closely, however, you will notice some big errors in judgment that I am ashamed to have made, both as that professional and as a lupus patient.  At my age, and at this stage of the game, there are no excuses. I know that you may not see some of the things I am about to mention.  This is where my personal accountability will come into play and I suspect there are many of you out there doing the same thing.  Let’s just put it all on the table right now. 

This picture shows me out there harvesting – at noon, when the sun is at its highest.  I’m out there without sunscreen.  I’m wearing a top that, quite frankly doesn’t cover enough of me in any way shape or form (I really need to either tone up or toss it out.)  My mouth is usually wide open when I harvest the beans and peas, aggravating my symptoms similar to Sjogren’s.  According so some nutritionists, I’m surrounded by tomatoes, that are considered to have inflammatory properties and may cause some people with lupus more trouble than they’re worth.  Well, this person isn’t going without her tomatoes, otherwise her temper will show some inflammation.  It is something to consider, though, when you are trying to gain some management in your flares.

This picture emphasizes what you don’t see.  No hat to shade my face. No water bottle to stay hydrated.  No one helping me do the work.  No thermometer to show me that it was already in the 80’s.  No time out break – I know it’s a small space, but you’d be surprised how long it takes to water and harvest this little patch!  That leads me to my last point in this hidden picture that isn’t so hidden: I have no energy to keep standing, because the sun and heat are already getting to me.

The good thing about this goof up is that I can easily fix it.  Not all things about lupus are that easy to remedy.  I can get out there before 10 am or after 5 pm, when the sun begins to ease up.  I can take a little shower caddy out there with me including a water bottle, sunscreen (to reapply when needed), a little thermometer to check the temp, a light-weight T-shirt to have in case I’m out there longer than I should be, and hard candy to keep my salivary glands active and mouth closed.  I can get a hat that can hang around my neck to remind me to wear it.  I can get a little stool to put out there when I get a little dizzy.  I can ask my two daughters to take some time and help me, giving us a chance to be together and talk. 

When we feel good, we forget.  When we hurt, we remember and curse ourselves for forgetting.

 These pictures show how I only have myself to blame when ( not if ) I feel like crap tomorrow.  Even with all my experience, I still struggle to keep my lupus hidden.  By bringing out my experience and knowledge about what I need to do doesn’t translate into being labeled as “sick” when I’m having good days.  When I’m not ‘at work’, I still need to be willing to acknowledge my responsibilities to my health.  Being able to be out there and by doing things right creates my chosen picture of health.  That is what helps keep things in the right perspective and me still growing.

Yesterday, I hosted an Independence celebration. Not only for our country’s independence from England, but also as a send-off party for three of the five high school graduates on our street corner.  The boys couldn’t make it, but the three girls and all their siblings (who also are all girls), enjoyed their transitioning from the kiddie table of life to the adult table. 

 As I scurried around making sure all my guests had food, beverages and an enjoyable visit, I:

• slammed my shin into a chair and the door of the dishwasher
• smashed my finger while closing a cupboard door
• hit my head on the deck when underneath while getting the folding chairs
• bit my lip while eating 

And the pièce de résistance? 

Nine of my piggy’s were being cooperative, but the big one on my right foot wasn’t paying attention and jammed itself into a deck stair.  You should see the glorious colors it boasts today for its miscalculation.

You may be asking what my clumsiness has to do with lupus or Independence Day.  Well, it certainly illustrates what a lack of mindfullness can lead to. 

How many times have I been bewildered listening to my mom complain about stubbing her toe on the same table she did the day before?  Over the years, I was unable to fathom why someone would keep doing that over and over again!  She knew the table was there and had the broken toes to prove it.  Yet, she continued.  I am beginning to realize, now, that it isn’t about not knowing where the table is at all.  It is about how our bodies and our brains tend to lose a sense of cooperation as we age.  We know in our minds that the table is there, but the communication with our toes gets lost somewhere in the translation as life, medications, and aging catches up with us. 

I’ve been doing a lot of reading lately about kinetics , aging and our brains and symptoms of health trouble.  That’s mainly because I want to learn as much as I can to care best for my aging mother.  However, as I continue to read and learn, I’m developing an understanding that all of what I’m preparing for applies to me, too.  I’m not as young as I once was, but the increasing bouts of clumsiness are pointing to some of my life’s influences that I am letting get the best of me. 

I know this is a Canadian senior-focused site , but it breaks down some of the more common reasons for clumsiness and you will see how much of this applies to us at any age, lupus involvement or physical condition.  This article also gives us some pointers on what we can do to prevent it, which brings me back to that independence and the postponement for this Wednesday’s gathering. 

Accidents happen and my day yesterday doesn’t necessarily mean that there is anything seriously wrong with me.  However, I am beginning to notice some trouble in maintaining my mindfullness and focus during the day.  When we are younger and/or not under the influence of stressors and meds, paying attention is so much easier.  We don’t realize how much work it takes to be that way until we have days like I did yesterday.   I do know that I won’t be able to support my mom’s (or my even own!) independence if I don’t start intentionally building some cognitive strength along with my physical strength.  To get through our days safely, we really do need both to be on board.

So, once my toe heals, we will be having that Target Practice gathering…if for any reason, to better avoid days like my yesterday.

 Hope you all are enjoying your weekend without any injuries, pain or discomfort~ take care!

Case in point, symptoms that present themselves when one is at a mild or moderate level of dehydration sound quite similar to my baseline lupus symptoms. What is frightening for me, personally, is how I am also seeing some of the severe symptoms  from time to time as well, telling me that this has gone beyond being a bad habit and has evolved into self-abuse.

Dehydration isn’t only a problem for infants and seniors, but is also a problem for those who live with chronic illness.  Medications, depression, lack of exercise, and caring for everyone else around us first can lead us into dehydration before we realize it.

I have been dealing with my usual February crud, that generally lasts on average the entire month.  I have no clue why it is every February and, since the month showed up before I could realize it, I’ve ruled out any self-fulfilling prophecy in action.  It starts out slowly then begins its movement from head to chest/cough to gut, back to chest/cough, head, and so on.  When I’m plugged up, I plead for drainage.  When I’m suffering from drainage-overload I wish for a good drying up to give me a break from the Kleenex™, sore throat and a constant hack.  It is during this ‘30-days in Hades’ sentence that I am reminded of my fluid intake habits, as I drink more fluids during this month than I do the rest of the year in total.  Even though I can easily point to my lupus as the reason why I feel the way I do these days, it isn’t my lupus at all. I’m beginning to pick up on a theme.  I’m not saying that my lupus is a fabrication, but that my behaviors really do influence my health both positively and negatively. 

This is a topic I’ve addressed here before. It applies to my new year of pursuing better general health habits, though. By addressing my dehydration and putting it higher on the priorities list than in previous years, I may actually make more headway in my lupus management specifically and my quality of life, in general.  As I think about my crud this month and notice my decreased kidney output, fatigue, foggy-headedness, poor skin quality, dry and burning eyes, muscle weakness, and headaches, I have to admit to that I have brought it all on myself with no interference from my immune system.  In fact, I suspect my immune system has turned the tables on me and is cursing me for making life so challenging.  I don’t blame it at all.

Although I know that this crud has to run its course, I have chosen some new ways in keeping my fluids up during and after this annual occurrence.  These may not be new to those of you out there, but writing them here will help me stay honest.  If you have any other suggestions, I’m open to hearing about them.

Starting this month, I will…

• …explore new teas and decrease my coffee intake.  Since I get so cold during the damp, winter months, I drink a lot of warm stuff.  Now that the sun/spring is on the way, I’m going to experiment with some homemade sun teas.
• …keep some type of soup in the refrigerator all the time for a quick breakfast, lunch, and snack. 
• …keep my desk cleared so that I can easily see if I have something to drink while I work.
• …try to keep from being slack-jawed while I think.  I have recently discovered how much I have my mouth open when I am working on something.  Could be why I picked up a cold at the height of flu season…duh.
• …not use my sense of thirst to determine whether I need something to drink.  I will use the empty glass on my desk or the clock.
• …when I go for ice cream, I’ll reach for applesauce instead.

and, finally,

• …will not keep track of how much I’m drinking, but evaluate how I feel every morning when I sit down to review my schedule for the day.  Tracking my intake amounts only puts additional emotional pressure on me to ‘perform’ and I am just stubborn enough to challenge it (as I have in the past).  By tracking how I feel and making sure I do these other previously-mentioned items, I am convinced that I will see some results.

What are some of the things that you do or have done that have worked to keep you ‘flowing’?

What Would Jillian [Michaels] Do if she had lupus? 

This guru of the moment, I have to admit, both frightens and intrigues me.  I will occasionally get sucked into an episode of The Biggest Loser on NBC, watching people get yelled at, encouraged, hugged, embarrassed, sweat profusely, swear, give up and persevere.  I, then, either change the channel thinking how much I admire them or I go find something else to do, so that I can avoid thinking about my own physical state of affairs…or both.

Jillian’s history with health and wellness stems from being overweight and angry.  For her, being overweight and needing an outlet to find some personal power was the lit match to ignite her towards the place she is today.  How different would it have been for her if her challenge was an illness like lupus, where, more often than not, symptoms are invisible, immeasurable and misunderstood?  Would she have been as successful in achieving what she has if it was something she couldn’t see? 

I think about that, as I sit here trying to get myself motivated to hit the gym.  For one thing, consciously exercising is foreign to me.  Being active, however, used to be very natural.  As I try to pinpoint the primary reasons why I resist being more active, I try to imagine myself as Jillian living with lupus.  Here’s a gal who could probably bully gravity from happening and that is about what I need in order to take my current health more seriously.  Would the same attitude and motivation have worked if she had to take into consideration the same things I do with lupus?  

• Out-of-the-blue fatigue that closely resembles being under the influence of anesthesia?
• Traveling pain and limited range of movement in varying daily degrees, locations or durations?
• Sensitivities to sun, florescent and, now, energy-efficient lighting?
• Understanding that her body is attacking itself and reacts to stress quite easily—even if it is simply due to dehydration?
• Depending on the degree of the lupus, the medications required sometimes cause muscle spasms, bruising and internal bleeding, bone loss, reduction in strength, and nausea? 

Aside from the physical stuff, how would her emotions have influenced her motivation?

• Not always seeing the physical challenges, but having them emotionally hang over her head day-in and day-out?
• Knowing that no matter what she did, how often she did it or when she did it, she would still not hit the end where control was hers to enjoy? 
• People telling her she looked fine, not understanding that it was taking every ounce of energy she had not to fall over?
• Feeling the pressures of trying to be as normal as possible on the inside as she appeared to be on the outside?

One might suspect that these considerations regarding her health would have made things very different for her and they would be reflected in the techniques she uses today in motivating others. Her measurable objectives and gains would need to shift away from actual weight or physical changes and focus more closely on the relationship between the person and their immune system.

• Wouldn’t she have to be more clever in motivating others than relying on the verbal bullying?
• Would she get as confrontational with people for not being able to move their arms without pain or not have the energy to push themselves physically?
• Would she worry that, by forcing their bodies to work harder, she would potentially risk  increasing their already accelerated immunological chaos?
• Would she view their excuses about being tired, in pain or their tears differently? 
• Would she be willing to accept less control in their own lives by recognizing that no matter what they do, they will still be ill? 

Would she still be the Jillian she is today?

My answer about her still being Jillian would be yes—she would still be the tough, unrelenting person that she is  and for one very important reason.  What motivated Jillian towards action was to do exactly what I need to do living with lupus:

Bring my invisible challenges outward and have the courage to face them.

For me, my lupus is under control and I would appear to not have anything wrong with my health.  That is the same with my weight and clothing sizes.  As I (and those around me) focus on what I see, it is the unseen or invisible red flags that pose the greatest harm to my well being.  My choice to avoid making my lupus visible daily gives it more control over my life than I ever get by ignoring it.  As Jillian made visible her personal struggles to overcome her lack of self-determination, so should I.  To put off something that frightens me more than I let on only fuels the lupus rather than control it.

Is minimizing the impact my lupus has in my life any different than a person who continues to carry around excessive weight?  No, it isn’t, because just as that extra weight weighs down a person from actively living, so, too, does the weight of carrying around the idea that if we don’t see our lack of health then it must not be that bad.  We humans, unfortunately, adapt very well to things we sometimes shouldn’t.

Transparency is something Jillian excels at and is what I probably fear the most.  The thing is, though, Jillian is already in my head.  I hear myself spewing the same insults, challenges, shame, excuses and frustration inwardly that we see on every episode of that show.  I become her and her verbal target all in one convenient package.  It is almost as if Jillian represents the once-healthy part of my Self and The Loser is the now ‘unhealthy’ part of my being, battling it out between each other all in the name of best intentions.  The Loser in me is winning these days and the Jillian part of me is pissed.  We all know what happens when she isn’t happy?

Three years ago, my total cholesterol was 270.  By body mass index (BMI) was 25.  My blood pressure was 110/70.  My weight was 118 lbs.  My age then was 44.  I carry all my weight in my core. I am a walking, talking heart attack with a side of diabetes to boot. 

My blood work also showed nearly normal levels in everything, even with my lupus and kidney disease, meaning I have less to worry about with them right now.  So, you can see why I would assume that NOT doing anything other than taking pills was working for me.  The reality, however, is that we rarely die from the diseases themselves – no matter what they are.  It is usually the “complications” that get us in the end, and heart failure would be it for me.  This 2009 research study conducted in Sweden gives another glimpse into why heart disease is a very real possibility for me.  Although I don’t have all the indicators and there are some limitations in the study, I keep this stuff around to remind me that lupus + kidney disease + sitting for long computer hours=big parts of the coronary picture.  I am hoping, though, that I am catching things early enough before I pick up all the other indicators mentioned. 

As someone who seems to do better on a team rather than alone, accepting the Jillian in me helps me gain some footing in my plans for better health this year.  Although the thought of having more shouting matches going on in my head doesn’t thrill me, treating myself gently isn’t getting me anywhere either.  As much as I want to believe Jillian would act differently if she had lupus, I know that the transparency she insists on from her team members is vital for me in getting things accomplished, too.

Bring it, Jillian.  I’m ready.

I have two teenage daughters in high school and I’m expecting any day now to be confronted with the virus.  I consider myself pretty healthy overall and have no respiration involvement with my lupus, so I may not even qualify as a ‘high risk’ in order to receive the vaccine even though I do have a ‘compromised’ immune system.  I also know that I am not as ‘healthy’ or durable as I have been in the past flu seasons…for various reasons like age, fitness and or stress levels.

I’ve never had the flu shots in past seasons, going against my physicians’ recommendations that I do so.  Once again my stubbornness in admitting that I am ‘sickly’ or need them gets in the way of some pretty important self-care.  I’m afraid that I will resist that “sick” label up until the very end.  However, going against my doctor’s recommendations doesn’t feel right nor is it recommended for someone in my situation, so don’t do as I do. I really need to work on this.

I ’ve been in some medical situations lately that have caused me to hold steady in the ‘questioning authority’ department.  The most recent was in dealing with my daughter’s volleyball physical.  I was reminded of how the kickback arrangements between doctors, the pharmaceutical and insurance industries are linked economically.  The more tests ordered, the bigger the kickback, whether or not the tests are truly necessary.

Do we buy into the media hype about this flu?  For those of us already being so careful about our immune systems and function well with our lupus (e.g. no respiratory involvement or current chemo/radiation), do we blindly accept all of these vaccine recommendations as precautionary?  The standard treatment for this flu is similar to other viral infections – wash your hands often, cover your mouth when you cough or sneeze and stay home if you’re feverish.  I know for people with compromised health, that may not be enough to insure getting through the infection quickly or without further complications.  However, I also personally struggle with the idea that the less I do challenge my immune system by dealing with exposures to foreign infections, the less likely my already confused system will really know what to do. 

I’m actually just thinking out loud at this point and don’t make any health recommendations about whether or not to get the vaccine.  No one can answer that for us except us alone.  However, asking some questions and being an informed consumer regarding our health choices is still an important component in making these decisions. 

Here is a quick list of links I’m looking at right now and today, there was a live “flu chat” (9 am PST; Noon EST) by Enoch Choi, MD  talking about the H1N1 and seasonal flu.  This is one of many web-based chats going on and it seems that the details about the vaccine, like quantity available and who qualifies for it, vary.  The prevention, however, remains the same.  These links aren’t through media sites, but you can always check with the local TV and radio stations for more links to visit: 

LFA website

Oregon.gov

flu myths and realities  

To locate a clinic near you

FDA.gov Consumer Updates

Oregon Public Health Hotline: 1-800-978-3040 

Although the vaccine is made available through the government at no cost, some clinics do charge to administer them.  OHP clients also receive it for free and registered providers through the local health department get reimbursed for administering the shots (however, costs for office visits are not). 

One of the barriers I face is not having medical insurance – I’m between not having enough money for private and too much for OHP ( I suspect I’m not alone).  The good news is that some local health clinics, rather than some private practitioners, offer the vaccine for about $15 or less.  That may be well worth the money if it also offers you some peace of mind.

If you are struggling with the decision or worried about what the H1N1 vaccine means for someone with lupus, read the information on these federal and state websites.  Also, just talk to your doctor about your questions and concerns. Perhaps being a little on the precautionary side of things would be wise and I may end up there after all is said and done.  Being cocky about my health has helped me in some situations, but it always has the potential to backfire.

When facing my lupus diagnosis, I sought out many books covering medical terms, confusing symptoms, current and potential treatment options – all to quench my thirst for conquering this disease single-handedly.  Early on, I didn’t recognize myself as a part of a medial team or a community.  Basically, my attempts to control my illness meant shutting off any communication that didn’t offer me any sense of personal control. 

Last month, I had the opportunity to review a new book on lupus that I believe, after reading it twice, would have saved me some valuable time, tears and energy if it were around when I first started my adjustment process in learning to live with illness.

The book is entitled Despite Lupus:  How To Live With A Chronic Illness (Four-legged Press, 2009) and written by Sara Gorman, who authors a blog under the same name.  I have been reading Sara’s posts for over a year now and have always felt a connection to her perspective on living with lupus by making self-supporting choices in living well.  When I received her book, I was thrilled to find the same tone and presence in her book as I’ve enjoyed on her blog.  She offers a comfortable blend of approaches including a ‘think-out-loud’ way of sharing her own personal experiences in adjusting to lupus and a casual, supportive style covering some practical tips, exercises, tools and questions as if you both (reader and Sara) are simply chatting over a cup of coffee.

Her book doesn’t focus on the medical information that can sometimes overwhelm us- especially early on in our adjustment process.  It is important to learn as much as we can about how our bodies work/don’t work, what our treatment options are/aren’t and what we can do personally to manage our symptoms.  However, coping and adapting to illness is complicated and requires addressing some of the emotional and behavioral choices or decisions we will face along the way.  This is where Sara’s book shines ~ its mission is to encourage the reader to look at their own personal roles in defining their lives with lupus and respecting their physical needs necessary to make their lives outside of lupus as fulfilling as they wish them to be.  She reinforces this by using the theme of communication throughout the book and shows how crucial it is in creating those fulfilling lives.  I found her chapter on communicating with doctors particularly valuable, as I believe the relationship between patient and physician is key in establishing healthy adjustments to and better choices regarding lupus early on.

Despite Lupus offers a great deal of information in a narrative style, rather than more of a workbook or structured format.   At first, it was difficult for me to see this as a ‘how-to’ book, simply because I am so used to other books leading me through steps that I could easily skip and exercises that I could blindly avoid.  Whether she meant to or not, her book’s format challenged me to read through, lulled by the sense that I’m learning from someone who “knows” what having lupus is like, only to discover that I had stumbled upon yet another skill-building technique I thought I had mastered the art of snubbing.  After a decade with lupus, I had grown jaded at reading the same tips and suggestions over and over, no matter how valuable I knew they truly were in coping.  A passage from Sara’s book perfectly describes my lupus moments or ‘fits’ I experience even today:

” …when life is forced upon you, without your consent, as your chronic illness has been, you panic.  You rush to defend yourself against the intrusion, fighting to preserve the comfort and control you’ve always known.  Not only are you seizing the past, you’re grasping the future.  You believe your plan is the only one that will lead to your desired destination, and anything else is a ruse. “    (Page 85) 

I have several books on lupus, or chronic illness in general, that cover the emotional and behavioral challenges we face within our self-concepts (or identities) when dealing with illness.  Sara delivers suggestions and steps in a way that gently encourages the reader to consider them, because they have worked for her.  I found that I was much more open to actually do some of them the second read through (I’m just extra stubborn), even when I knew they were coming up.  She offers them as a friend, not a guru, and that helps me remain open to trying.

Sometimes hearing other peoples’ tales about their lupus experiences can be frightening, deeply saddening and leave us more locked into refusing change than ever before.  I can assure you that Sara’s book provides clear pointers for newly-diagnosed patients and some valuable reminders to those of us already well-versed at lupus.  By learning more about her, she inspires us to step back and consider possibilities, communicate more clearly who we are to ourselves and others – and to define our lives to be well worth living, despite our lupus.

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October 23, 2009 Update:

Sara will be joining in on our November book discussions!  We will be on the Ning Communities of Ardent Celebrations and LupusMCTD, WeAreLupus.org and Shelfari.com.  We will also put up a post on our website November 1st  introducing the discussions , so that you can comment about the book here if you prefer.  Sara will be doing the same on her website.  We look forward to you joining  us~ 

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I was not paid for this review. Sara sent me a copy of her book for review. The opinions expressed are all mine and I thank Sara for allowing me this gracious opportunity.

I’ve been going to various support group meetings lately in preparation of my next article for the Pacific NW Chapter’s (LFA) newsletter ” In The Lupe! ” .  I have to admit it was also for personal reasons that I decided to dive back into exploring where support group participation fits, or doesn’t fit, for me. 

Generally speaking, support groups are defined as either professionally-led, therapeutic and focused groups with limited membership or peer-led, open groups focusing on self-help and outreach.  The ones I have been attending around here are peer-led groups for chronic illnesses and not specifically for lupus. 

When I was first diagnosed, my rheumatologist recommended that I join a peer-led support group to learn more about lupus.  Of course, he wasn’t able to provide me with any answers regarding the where, when, who or even why questions I had…he only suggested that I go.  He’s a great doctor, don’t get me wrong.  It’s just that at the moment of ‘impact’ when I’m told my life has changed, it would’ve been nice of him to have offered a little bit more. It was clear that our relationship was new, because his suggestion didn’t resemble at all how I coped with trauma or crisis at that time.  Sitting in a room with a bunch of sick people who I didn’t know was supposed to somehow help me?  I remember shaking my head and politely declining to go.  Besides, I didn’t seem as sick as other people were and didn’t think I needed to go. In reality, I was much more ill than I realized at the time.

There is plenty of research available on how beneficial groups are in offering us emotional and practical social support. Benefits from social support are not simply the information or kind words that we receive, though.  The benefits come out of the interaction that occurs between people, thus creating a reciprocity, or exchange, in the giving and receiving of support. How we receive and the quality of it is important, but it is even more important to understand whether we personally believe we will receive support and whether or not we actually do.  Support isn’t always the beneficial or positive experience we sometimes think it is, either – it can also be harmful or negative. These ‘negative’ experiences are usually the result of us expecting support and not getting what we need, making the sources of support we seek out vital in creating a positive experience. 

Participating in a support group puts us in a physical space that forces us to step outside of what we know as ‘comfortable’.  You may not want to take on more discomfort if it isn’t necessary.  However, when we reach some plateaus in our symptoms or confidence, we can resist building new strengths and skills.  Stepping into an unfamiliar situation or being among people we don’t know makes us question whether or not we will receive the support we’re looking for.  The relationship we have with ourselves is much easier to trust in than a perfect stranger.  Risking to invest in or build a new connection is usually at the heart of our resistance to participate.

My initial resistance wasn’t simply a matter of not being as sick as the others – really.  It was whether I felt I could take on trusting someone with all that I was going through.  When I am confronted with a crisis, I tend go inward.  In the beginning, I wanted some control in how much risk I was putting out there and so I decided that focusing on myself alone was where I felt strongest.  Eventually, my doctor saw how strongly I felt about that and praised my determination to do what was best for me.  Although a thriving support group is dependent on participation, regular attendance may not be as supportive to you as it is for another person.  However, taking part in a group from time to time offers you social support that you simply are unable to receive in any other social setting. 

I understand today just how valuable social support group participation can be, both through my personal experience and professional research. I no longer resist the idea of attending groups believing they don’t offer me anything I can use.  Instead, I believe stepping into a group and outside my comfort zone offers me an opportunity to participate in a process, creating a different sense of support whenever I need a little boost in living with illness.  Here are three suggestions I have if you still aren’t sure whether a support group is for you:

Consider your timing.  Personally, I wouldn’t recommend attending a support group immediately after diagnosis simply because the introduction to lupus isn’t an easy one…usually.  As research shows in trauma counseling, some time to ‘stabilize’ before talking about things is more beneficial to the healing process.  This is a good time to focus on you and your health to gain some balance by building your treatment team and strategy.  Seek out those individuals in your support network who can at least offer what you feel you need to get to there, such as a good listener, social and exercise buddies, etc.  Also, this is a good time to seek out books that ‘speak’ to you in a clear format, reliable content, appealing style and address similar goals.  Some doctors recommend waiting to explore the internet.  If you do choose to visit websites, blogs, message boards and social networks, be careful and always check with your medical provider before initiating anything new.

Here in Oregon, there are few lupus support groups to choose from.  In the beginning, you are needing to focus on managing your health and I have found that attending support groups for illnesses such as arthritis, scleroderma, or other illnesses that have an autoimmune focus are just as effective simply because we all share similar challenges, medications, physicians (rheumatologists).  Even though fibro isn’t technically an ‘autoimmune disease’, many people with lupus also have fibro and their groups can offer good support, too.  If you are somewhere that offers more than one lupus group, you have more options to find the right group that works best for you.  Let’s face it, being in a group is a complicated process and the goal is for everyone to believe they will be supported.  Find a group that motivates, listens and encourages you to live well.

Finally, I strongly recommend that newly-diagnosed patients, or people considering support groups as a management strategy, first take part in a chronic illness workshop .  These classes cover the primary issues, offer clear strategies and reliable resources that are beneficial in gaining some stability with your illness.  I found that attending a workshop this year didn’t offer me much in new information, but definitely reinforced those basics allowing me a chance to evaluate my current management strategies.  It also introduces you to living with illness less ‘public’ exposure emotionally through a smaller groups.

My next LFA article will cover the individual decision process, what my research has to say about groups here in Oregon and what general things to look for in a support group.  Here, I can sum it up by using the song lyrics performed by a group who also offers a very fitting description of the participation decision itself: The Clash~ 

If we stay (to ourselves) believing we can handle lupus alone, we are doubling our challenges in trying to remain ‘normal’ burdening ourselves further.  The very defensiveness we harbor through refusal, denial, persistence, anger or independence tells our over-reactive immune systems what?  “Fight“.  I don’t suggest waving the white flag, but I do recommend that you ask yourself “What am I really fighting and why aren’t I calling in reinforcements perched to help?”  They are waiting to hear from you, but you have to send them the signal.  Regarding groups, “What is the risk/are the risks that keep me from going?” 

If we go (to a lupus support group), then there will be trouble for us initially by moving into territory we already know to be difficult:  living with illness and what it does to us emotionally.  Although a good support group will incorporate many different aspects to the coping process rather than just the emotional components, even those of us Rocks of Gibraltars need to nurture those needs…whether we want to admit them or not.  Simply being in a room with others who share a life with illness affects us more deeply than we know.  It isn’t about being like the others or even uttering a word while we’re there.  It’s about being somewhere without needing to explain ourselves.

The only person who can tell you whether you should go or whether you should stay  is the best person to answer the question – you. Support groups can offer you valuable, unique benefits – the only thing you may be risking is merely an opportunity to sing a new tune.

a) didn’t have lupus and all the emotional upheaval that the lack of control brings

b) exercised regularly so that the blood keeps flowing to my brain

c) didn’t have expert-level skills in responding to chaos, and

d) lived completely alone on a tropical island somewhere

Last Monday was the final session of the Living Well with Chronic Illness workshop I’ve been attending (See Working on Facing Change) .  We discussed dealing with our illnesses in the futures building on all of the topics we covered ranging from our emotions to being ill to specific actions we can do to make living with illness better.  This workshop definitely gave me a better perspective on some basic topics ranging from effective information sharing (communication) to evaluating my situation and goals (action planning). During this six-week review, I realized that I am completely unprepared (as is my family) if something were to suddenly happen to me (organizing medical, healthy living and emergency information).

Some of the tasks that I have added to my list of weekly action plans include learning more about:

Advance Directives

Organ Donation registration , and

DNR’s (Do Not Resuscitate orders)

I’m also in the process of creating or seeking templates for the following:

An Emergency Health Information card to carry with me (the format doesn’t matter as much as  the information)

A Health Team Roster (Contact List) to share with family and friends including roles

A Medical/Health Reference binder for medications, dosages, allergies, and specific illness-related topics (such as sun and fluorescent lighting info for flare management, minimizing dampness or cold temperatures to minimize raynaud’s, tracking symptoms and diet) to bring to my appointments

A Self-care wish list (things that help me feel better, laugh or generally make me happy if I can’t communicate – either because of health or if I’m just not up to relying on others’ help* )  

*Ideally, the items on this sheet will offer my loved ones ideas on how they can help when they see me hurt

Sounds like a lot of work – and it is.  However, as I struggle to maintain my independence and not burden my friends or family, I need to insure that independence by taking the time to define my life now (and in the future) -it is my responsibility.  Another flexed muscle for healthier self-determination. 

What would you recommend?  I know there are a lot of you out there writing about the importance of this stuff, too.  Please comment here listing any local and national/international resources, recommend websites, offer up your blog post links, and words of wisdom so that we can – as a community – offer these important reminders to others living with, or even those living without, illness.  

I’m going to do a shout out to a few blogging buddies asking them to add their two cents and I encourage you readers to do the same with your friends. We need to do what we can to take care of ourselves and our friends – simply by initiating the conversation.

Hey, Leslie!

Hey, Sara!

Hey, Julia!

One last thing, here is a link that I came across on ABC news the other day that covers some of the key points the local living well workshops do – good advice and also a great kick in the tail to help me get busy on these necessary homework assignments. 

Looking forward to hearing – and learning - from you!

A member and friend of the MLWT community here sent me this wonderful 2006 video – a beautiful reminder to stop and reflect on some of those basic things in life we routinely forget.  Whether you live with illness or not, please take these next five minutes to stop, listen and remember.

Thank you, Lori – truly a gift and you couldn’t have chosen a better day.  I’m not ashamed to say I cried – and it felt so good.

“Live an Extraordinary Life”

Knowing that, why is it that I have to constantly ask myself:  “Who is on first”?

My living with lupus and watching a game of baseball are a lot alike.  In fact,

 being the fan I am of  baseball, there are many commonalities with lupus that I want to remind myself of.  Maybe seeing these connections as I head into Spring will help me feel more motivated in paying closer attention to my own game:

All ‘players’ look like they can play just fine, until they either hit the field or the batter’s box.  There are on and off days, no matter what uniform you’re wearing.

Generally, there are coaches and umpires all screaming at us to do this, that or let us know how we’re doing.  In fact, they sometimes reside within our own heads. 

There are frequent tests and concerns about lab results, occasionally culminating in some pretty harsh judgments when meds -like steroids- are taken (granted, they are not the same ones athletes use)

We’re always pitched to, thrown to, batting at or having to catch a ball -  usually from someone else. 

There’s no place like home(plate), but you’re still important if all you do is bunt or sacrifice - it’s sometimes necessary to advance another player for the good of the team.

The game may be slower paced, but the strategies involved with winning the game are very important.

The amount of money that is exchanged is mind-boggling.

There are days when we strike out or hit it out of the park – either way, we need the support of those watching from the stands.

We made not make it to the majors or the World Series, but the importance of training and our gritty determination will get us through the ‘off-season’ as well as the ‘playing season’.

I think the most important comparison is the fact that this is a team sport.  One player doesn’t win the game and communication, trust and good sportsmanship offer us great opportunities to stay in the game with a strong team.  You may or may not be a baseball fan, but living with chronic illness is quickly becoming an American ‘favorite’ pastime -whether we want to play it or not.  Grab yourself a mitt, pull together some teammates and prepare to play ball the best you can.  Develop signals, practice time outs, resist storming the mound, be on the constant lookout for the ‘refreshment’ vender…

and no matter what, always know who is on first!