Usually, I only take two medications to manage my lupus and it’s affects on my kidneys.  Those two medications are an immunosuppressant CellCept ® and the ACE inhibitor/diuretic brand name Lisinopril .  I have been through many more pills and higher dosages over the years, but have been consistent in this current regimen since 2007.  In all honesty, there have been some hitches in dosages from time to time.  However, I’m fortunate to have a physician who trusts me to be responsible and upfront with him if I really change things up, other than just a missed dosage or two.

I mention my meds because I know that taking pills bothers many of us and that, even though these are the only pills I have to take on a daily basis, I still fight taking them.  You may notice that I don’t list supplements and that is because, well, I hate taking pills.  I am changing back to my original medication program to include calcium/vitamin D, though.  I stopped taking them for about four months to rule out some of the digestive issues I was having and now believe it was the brand, not the supplements themselves, causing the trouble. I’ve just been lax in buying more and starting up again.  I DO NOT recommend that you do not taking them, especially if you’re doctor has told you to take them.  Please do as I say and not as I do.  Listen to your doctor.

As I get back into paying more attention to my lupus and the methods I use to re-connect the dots (so to speak), I see that I practice a great deal of mind-body therapies instinctively.  That means, I don’t resist standardized medicine completely or consciously.  I merely automatically seek ways to tie together what I think about my health with what my body tells me that I can understand.  With kidney disease, we just can’t know all that is going on, because there are very few outward symptoms to notice until things are in really bad shape.  With my lupus, though, there are other symptoms that are familiar to me and easy to track.  It is still advisable to run them by your doctor, but you may be able to take some steps to address them until your next appointment.

These familiar and less intrusive symptoms are what I focus on when I practice my self-care to help heal the over-board immune response that is my lupus. These symptoms include headaches, fatigue, “brain fog”, heat and swelling in my tendons (ankles and wrists, mostly), eye sensitivity, mouth sores, sun sensitivity, stiffness in my joints, indigestion and so forth.  Although sometimes these can be extreme and are then shared immediately with my physician, I have found that I can minimize their impact if I get to dealing with them as soon as I notice them coming on.  There are some other non-traditional lupus symptoms, but still seem to be involved in my immune ‘surveillance system’ reacting to threat.  Most common include hot flashes/sweats, sleeplessness, confusion, dehydration and appetite changes that I suspect have more to do with the fact that I’m nearing fifty and/or not managing my stress levels effectively.

One of the mind-body ‘therapies’ I use quite often is Autogenicsˡ.  In a nutshell, this therapeutic tool is simply using self-guided verbal instructions addressed to specific parts of my body.

Although I sometimes feel like my dog listening to me tell him what to do all the time, there is something about actually hearing me tell myself “Stand up” when I’ve been at the computer too long.  I’m not kidding, saying it out loud makes all the difference!  Let me clarify that I’m not bullying myself into standing, but simply (and with stern encouragement) motivating myself to practicing some self-care.  The reason it is more effective if said out loud, which has been known to create some confusion in social settings, is because we need to get out of our heads sometimes to take ourselves more seriously.  Only thinking to myself that I ‘should’ stand can be, and is often, ignored by my stubborn disposition. Besides, “should” is not a word I am particularly fond of nor respond to favorably.

I started with simple ones, such as “sit”, “eat”, “stretch”, “breathe.”  I’ve moved up to more specific, but still short-and-sweet, ones like “go to bed”, “drink some water”, “park farther away” and “grab some fruit, not that cookie.”

This really simple tool, and many mind-body therapies are, get me to listen to my gut instinct through practice.  Making that connection between serious self-care and recognizing the partnership between what I’m thinking and what I’m doing, has truly helped me address my constant dehydration and develop more consistency in remembering to take my pills.  Introducing the supplements again will be my new ‘trick’ to learn and, yes, there will be treats involved.

I’m going through my list of favorite mind-body tools and will post them all next week.  Some you may already know about a few of them or maybe you haven’t tried them yet. I encourage you to think about giving at least one a try and to come back here to share your experiences.  If you have resources (online or classes) that you have found to be helpful in learning more about any of the techniques I cover, you are more than welcome to send them in and I will include them in the next  MLWT  Musings e-newsletter.

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Source:

1. Maizes, V. &  Low Dog, T. (Eds.). (2010). Integrative Women’s  Health.  New York, NY: Oxford University Press.

From time to time, I remind myself that I’ve put off “me time” too long when I have yawned for the third time within a single minute or discover myself slouching to the point of nearly laying face down on my keyboard.  When sitting up straight is too difficult, that signals that my priorities are WAY out of whack and need attention. I need a solo.

One of the very simple things to do is a brief “needs” intervention, which, for me, includes simply focusing on my breathing.  Basically, it isn’t just the disease that puts us in a world of hurt, but rather the interaction between symptoms and habits that orchestrate in a cycle between our mind and body, fueling the velocity and direction in which our symptoms affect our lives.  In the Living Well workshop, breathing is one of the tools recommended to include in our self-management “tool box” that we can use to help interrupt the chronic disease symptoms cycle.

These days, breathing is often equated with meditation or yoga and can raise the hair on the back of some of our necks because we aren’t “that flexible” or “just can’t sit that long in one position.” For me, my brain gets in the way.  I know that it is natural for my mind to wander when given some quiet time and, with practice, it will wander less the better my skills become.  The fact is, though, I’m just too plain lazy to practice. Yet, I still want the benefits of what I know good breathing techniques offer, but I want them in a way that I can sneak into my days rather than having to schedule around my bad habits.

Although there is a vast amount of research supporting the benefits of meditative and deep breathing on health, interventions don’t have to require a lot of sitting time for short-term benefits.  Granted, the longer you invest into breathing, the more you will benefit from the breathing exercises.  However, more research is coming out saying that taking part in a health intervention (e.g. nutrition, exercise/movement, breathing/relaxation) briefly throughout the day, every day, shows improved results more than doing nothing at all.  This is particularly important for those of us who are stuck at a desk, riddled with pain and have restrictions in physical mobility, have limited resources to afford gym membership or lack motivation or social support to get us more active. Breathing is free, something we already do and is a key tool for on-the-spot symptom cycle interference.

Somewhere between tense muscles and pain is a perfect place to put in a few deep, diaphragmatic breaths (breathing in through your nose, expanding your abdomen rather than your chest and breathing out through pursed lips) to remind your nervous system it is time to relax.  The trick isn’t just the breathing, though.  It is in picking up on the cues your body is sending you and trying to regain some balance.  Pain creeping up on you? Jaw clenched? Yawning a lot?  Feeling antsy or jittery?  Losing steam?

 “Where are your shoulders right now?”

 Anything that helps us link our brain with our body helps set things straight in many arenas and taking a moment to breathe well buys us some time, slows down the cycle of disease, treats ourselves to some self-care and allows our many internal systems to orchestrate more efficiently.

That is beautiful music for those of us with systems playing like death metal – screaming, head banging and speaker feedback.  Right now, take back some control with two slow, deep breaths (only one breath if you have COPD or other breathing challenges, until you see how you do).

• Sit up straight and place your feet level on the ground, one hand in your lap
• Close your eyes
• Place your other hand on your chest
•  Take in air through your nose, slowly, expanding your belly and keeping your chest still (your hand placed there will help keep you honest)
• Breathe out, slowly, through pursed lips until all the air is expelled (if you get dizzy, you’re doing it too quickly)

You may have noticed that releasing the air through pursed lips takes longer than usual and there seems to be more of it.  There is~ rather than only filling the top of your lungs, you’re filling the entire lung to include the deeper, less used portions.  This helps keep things healthy and working. In addition, it also quickly gets some of that needed oxygen into the blood stream to reach muscles, your brain and send those messages to all of your systems that you’re back into the priority spotlight for the moment.  Normally, our autonomic nervous system takes care of the oxygen monitoring for us.  When you choose to be proactive with your breathing if things don’t feel right, you are doing the conducting.

Try it for two weeks, three times throughout the day and assess your stress level on a scale between 1 (low) to 5 (high) every evening.  By the end of the week, you want to be seeing numbers closer to 1 overall.  Breathing won’t keep stressful events from happening, but, hopefully, you’ll notice more emotional/physical resilience (the ability to adapt and keep going) from the breathing exercises helping you get through the more difficult notes.

It only takes a quick beat to change the melody of a song, but adding them more often throughout can make a real difference in the entire performance.  And you’re the key to making it happen, so prioritize yourself daily, if only for a beat or two. 

I am pleased to introduce author and pain archeologist, Sue Ingebretson, as our guest for today.  You may already know her from her website Rebuilding Wellness and/or from her book, FibroWHYalgia . You can also find her on Twitter and Facebook.  She lives with Fibromyalgia and works diligently in creating self-care resources to address the many challenges (and oppportunities) living with fibro can present.

With today being a big day in building awareness for Fibromyalgia, I asked her for her thoughts on a pet peeve of mine, where we in the health and wellness arenas can sometimes fall into focusing so much on managing illness that we can actually derail building wellness.  Please welcome Sue and learn a little more about what she has to say about being your own best coach in pursuing healthful possibilities.

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How Do YOU Manage Your Chronic Condition?

As a member of the FibroFix Team, I helped to create a free eBook that can be downloaded here. In this book, The Top 5 Health Mistakes YOU May Be Making Right Now! I listed one of the mistakes as this:

“Managing your illness rather than your wellness”

Do you see this as a problem for you?

In a nutshell, I pointed out that managers – or coaches — have a great effect on their teams based on their words. Most coaches uses inspirational language – phrases such as: See the finish line in your mind as you move forward. 

That makes sense, doesn’t it? Encouragements from others can really help us stay on track. It sharpens our focus and bolsters our motivation to reach our goals.  But what if the language from our coaches is negative? What if a coach said this to a member of his or her team: Make sure you don’t trip and fall like you did the last time.

How do you think a phrase like that would damage a person’s motivation, or worse, their self-worth?

The real problem is that we are often our own worst “coaches or managers” when it comes to life planning and setting positive goals for ourselves. A lifetime of experiences has taught us to think more negatively than positively. Many call this, “just being realistic.”

I don’t agree. Is it “realistic” to set intentions that may not ever come true? I know a lot of chronically ill people in my local area support group who think this way. They don’t commit to events or meetings because they might have a flare that day. They retrofit their homes, cars, workplaces with accommodations for future disability issues. They take pharmaceuticals that are intended for “the bad times” now so that if a crisis hits, they’re ready.

Is that realistic or pessimistic?

What if you turned that thinking around? Consider PLANNING for success and improved health. Coach yourself into positive thoughts such as:

My body is growing stronger every day

I see great improvement in my energy levels as I take care of myself 

Putting my self care needs FIRST, helps me to prioritize everything else

When it comes to self care and keeping a positive attitude, I’m often asked which comes first. The best thing is that it doesn’t matter! A positive attitude helps to motivate you to take care of yourself and taking care of yourself helps to foster a positive attitude. In all scenarios — YOU win! 

Try these basic and simple self care methods: 

• Move the body in a healthy way every day. Whether it’s walking, swimming, gardening, dancing, etc., moving your body each and every day is vital. Move within your own capabilities respecting any personal limited mobility issues. 

• Drink plenty of pure, clean water (that doesn’t mean water from the tap). 

• Include plenty of nutrient-dense, fresh veggies in your meals every day. 



• Breathe deeply – taking deep belly breaths – at any sign of negativity, anxiety, or worry.

• Create a bed-time routine of turning off TV’s, radios, etc. and write in a gratitude journal, read a good book, or take a warm bath. Whatever your routine is, make sure you stick to it and prepare yourself (mind and body) for a night of restful and restorative sleep. 



Applying just a few, simple self care activities into your daily life can have profound benefits! 

If you’re in the Midwest, The Fibromyalgia Coalition offers an amazing conference each year in May. Click on the 2011 Conference link for more details.  If you’d like an in-depth and personal educational series about healing from chronic illness (not just for those with fibro) that you can participate in from your own home, view the details of the FibroFix System here.

There’s always more to learn, so tune in to educational opportunities that meet your needs. Set your intentions for a positive and healthy future!

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Sue’s book,  FibroWHYalgia will be our first MLWT Book group pick beginning this Fall.  Here is a little more about it: 

When Susan Ingebretson found her health spiraling out of control, she wanted to know why. Her tenacious research into the causes of chronic illness led her through a maze of traditional and nontraditional healing methods. Ingebretson eventually connected the dots and found wellness. FibroWHYalgia is a half diary/half tutorial guide that exposes the facts, fibs, and fairytales of failing health and offers practical solutions. Included are detailed descriptions for making nutritional, fitness, and stress-relieving lifestyle changes.

Susan Ingebretson invites anyone with chronic illness to come down from the spectator seats and participate in restored health.

More about Sue~ 

Ingebretson was featured in the March 2011 issue of FIRST for Women magazine and made several guest appearances on the nationally syndicated health TV program, Know the Cause! Her writing has appeared in the National Fibromyalgia Association (NFA) print magazine, FibromyalgiaAWARE, and the Fibromyalgia Coalition International’s magazine, Fibromyalgia Alternative News. Ingebretson is a contributing author to, The Gratitude Book Project: Celebrating 365 Days of Gratitude and the eBook Fibromyalgia Insider Secrets: Top 12 Experts. She has also authored many books for Playbooks, Inc., a children’s publisher of instructional classroom books. Her book, Fabulous Food Detectives, teaches students to read food labels and discern the difference between whole and packaged foods. 

Ingebretson posts news and encouragements geared to promote positive lifestyle changes and healthy living.

I got a wake-up call this summer with regard to my health. I have cystic fibrosis, which entails a whole routine of treatments and medications that basically manage my disease.  But this summer I was exposed to mold, not realizing that an allergic response would set off a cascade of inflammatory processes in my lungs that would take months — years? — to recover from.  And the truth is, I don’t know for sure if I will ever regain the lung function I have lost this summer. 

This turn of events has led to a whole new definition of “chronic” to my illness. Before, when I got sick, I would start a regimen of medication and treatment and get better. End of story. Now, I don’t know if I will get better.  This may be my new normal.   And the truth is, this scares the pants off me.  Fear has become an unwelcome companion in my life lately.  And I suspect many of you can identify. 

When an illness that has basically been manageable takes a downward turn, when it feels like there may be no real light at the end of the tunnel but just a long slide into the unknown, this is really scary. There are no two ways around it. Maybe we will get better, maybe we will feel “normal” again, but when the fear takes hold, it is powerful. 

When this fear has the upper hand, my inclination is to pull back from life, to worry all the time, to carry around a constant knot of anxiety in my stomach, to view life as a series of potential problems that may or may not have a solution. My brain keeps throwing out “what if?” scenarios — what if I’d never got in that mold? what if different medications would be better? what if this is the beginning of the end? — which frankly, don’t do anything but keep me in the tailspin of worry and frustration, and feeling like somehow this is my fault.

I have really been studying this fear, and invite you to do so as well.  Because the truth is, when I let fear be in charge, my life feels pretty miserable.  And it feels like it comes down to a choice: fear, withdrawal, and obsessive anxiety; or, a choice to engage life *anyway*, no matter what’s going on with my health.

What does it mean to me to engage life? To me this means, to take a deep breath into that knot of anxiety and ask myself, what would spark my interest in being alive in this moment?  What would feel creative and fun and help me relax a little?  This could be anything, from puttering in the garden to coloring with crayons to browsing at the fabric store.  A happy movie.  An evening with friends.  Soaking up some sunshine. 

What is it for you? What helps you move beyond that fearful routine and feel happy to be alive, even in the smallest way? What loosens up that feeling of being stuck in a sick body, and instead helps quiet those worries as you are absorbed in participating in life?

I think this choice, to participate in life anyway, is the most profound gesture of healing we can make.  Because ultimately, with my last breath –be it in 5 years or 50 — I want to feel I’ve lived my life, not just existed in a paralysis of depression and anxiety.  I want to feel like I’ve really been here, like my unique creativity has had a chance to touch other beings, other lives, in a positive way. 

It is not always easy to make this choice; it can feel so much easier to stay stuck in the fretful routine and blame it on our illness.  Fear can be deceptively compelling that way. But I intend to keep trying. Because to me, this gesture of creative participation in life feels like it will bring more healing to my body, and the world, than a whole lifetime of worry ever could.

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Sarah Nuxoll is an MLWT Guest blogger, a mother of two, a doula and  spiritual practitioner living in Portland, Oregon. Learn more about her and all she offers on her website, Welcome with Love   and be sure to say hello.

As I am posting this next photo for the National Invisible Chronic Illness Awareness Week  , I noticed that there are a few interpretations that can be applied to this particular picture.  Isn’t that just like lupus?  It represents something different not only from one person to the next, but from one minute to the next!

What I was going for here was the example of how my lupus tends to insist on being included in my daily activities.  Let’s take that a little farther, though.

What else can I see going on here?

~I see someone in the middle of a conversation who is looking at me and NOT interacting with my lupus.  She either doesn’t see it, doesn’t care to see it, or doesn’t want to socially engage with something/someone unknown to her.

“Do I introduce her to my lupus or do I try to ignore the interruption?”

~I see my lupus approaching with ‘body’ language that would appear less threatening and genuinely interested in being included.  That sounds ridiculous, doesn’t it?  If you think about it, lupus is a disease where the immune system becomes confused and works too hard, forgetting how to do the job right.  When we perceive threat, what are we really telling our immune system?  Fight harder.  In order to help our systems and manage our lupus, we have to become effective mediators.

“Would I choose to assume I’m being threatened or is there a chance we can negotiate?”

How about the other body language in the photo?

~ I see myself standing with arms tucked close to my body and my listener is doing the same.  In fact, the only ‘person’ engaging in an open communication is my lupus!

“Does that look like a conversation someone entering into the picture would feel excited to join in on?”

~ I appear to be frustrated, irritated, in pain or dizzy/fatigued.  Even from behind, my listener seems to be waiting to hear more, perhaps to figure out what is going on with me.  A caption would be helpful…or even audio, so we could hear what’s going on.

“How do we know what I’m really feeling?  Do I even know myself?”  

You can see where I’m going with this.  We represent our lives with illness every minute of every day and we need to recognize that we are solely responsible in making sure the picture we’re putting out there is the one we want people to see.  Granted, there are a lot of compassionate and committed people in our lives who “get it”.  However, there are many more out there who don’t get it and won’t, even if they have lupus themselves.  Rather than focus on how frequently pictures of our illness are misinterpreted, let’s ourselves get behind the camera and create the photo shoot we want.  We can never completely rule out individual interpretations.  However, with a little planning, we can better minimize misunderstandings. 

This week, ask yourself about the snapshots of each day.  Who is the subject?  Where or how is lupus involved?  What are you doing, feeling, needing right now?  What is your body language saying and is it what you want it to be sharing or would you make some changes?  If you’re feeling particularly strong emotionally, ask others what they see and listen to them.   Are they on target or are there some revisions in your picture necessary?

What else do you see in my photo here today?  What are the little details that I haven’t mentioned that stand out to you and bring more to this ‘conversation’?  What may seem unimportant could very well introduce barriers or open doors, so it is a good idea to keep our health pictures as uncluttered as possible to ensure others will pick up the messages we are intending.   As Henry David Thoreau put it: 

“Our life is frittered away by detail… simplify, simplify.”

Model the day you can have, even if it isn’t exactly the one you would like to have.

And, most importantly, be sure to give yourself a smile.

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.