Not to say that using materials to network wouldn’t be smart, as I aim to make a living, but it just isn’t who I am.  So, you probably won’t see anything about me at the next health fair or support group meeting.  This website is enough for me and referrals from people matter more than anything.

What I have been asked to do, however, is to write up a bio and put together a CV (Curriculum Vitae) for new collaborations with Naturopaths and health systems that I’m now working with directly.  It has been a struggle to comb through years of service work, counseling, grant writing, program development, crisis intervention/family mediation, youth case management, graduate studies, research, and so on.  I’ve also learned that it is very important to include volunteer work, which only made this whole exercise that much more daunting.

This additional recommendation of using volunteer work as “work experience” reminded me of a conversation I recently had with a workshop participant about how much work living with chronic illness can be for all of us.  Simply managing all that we have to manage to get through our days, weeks, months and years is, in itself, a full-time job.

My exercise in getting this bio/CV put together has been to go back to my professional beginning (starting in high school, apparently) and identifying all of my skill building opportunities that have contributed to who I’ve become over the years. Basically, write my professional story.

I would say that we could all stand to take some time and write our story, as if learning to manage the challenges of our health has become what we “do.”  Why not?  We keep going to workshops, reading books, searching the internet, taking classes, going to our medical providers….all under the assumption of “If I just knew…” 

Through my work as a facilitator, and based on my past service work experience, you will discover what I have over the past couple of days in doing this exercise…

we already know a hell-of-a-lot…and it’s damn time to give ourselves some credit for it. 

Take time to stop expecting someone out there to have more knowledge about how to care for ourselves better than we already do.  Give ourselves more credit in the level of expertise based on our own personal experience, trial-and-error and real-time living.

Write your own C.I. (e.g. chronic illness) ‘resume’ – you will be shocked at how powerful your own professional skills have truly become over time.

And smile – you’re amazing.

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.

One of the most important points I make when co-leading the Living Well With Chronic Conditions workshops is the difference between acute and chronic conditions. I may have covered this before, but bear with me as it is well worth repeating.

 Acute conditions usually have one cause, begin rapidly with a short duration and are diagnosed rather accurately. They often have cures that physicians can easily guide us in taking clear, decisive measures to getting ‘well’.  Chronic conditions are, of course, the opposite.  They gradually occur with many symptoms that come and go with no specific origin at first.  There is often more than one treatment or medication to chase symptom management, tests are usually inconclusive and cures are rare.  The roles of the health professionals are, at best, only able to educate and advise us, frequently requiring us to build a partnership with them in learning how to ‘manage’ rather than ‘return to’ optimum health.

For several years now, I have been relatively lucky and blessed to have my lupus of the more manageable type, although kidney involvement can get serious even without any apparent symptoms.  I have learned to know how my body works, what it responds to best and the unique needs it seems to require of me.  There are times when I do refuse to listen and it is very good at letting me know when I screw up.  My symptoms have been quiet and my blood work has shown no outward activity.  That’s the thing about lupus – we ask ourselves in the beginning “Is this lupus?” with every odd symptom or virus that comes our way. After we get better at learning the difference and things do improve, we can’t help but want to simply believe it is merely the flu.  We want to put lupus behind us and take every opportunity to do so.  I never had the typical lupus symptoms and apparently I never will.  So being on the lookout for ‘lupus’ was easy for me to let go of and minimizing the little stuff came quite naturally.  The only thing that kept me focused on chronic illness at all was my health experiences from the past and my current profession.

Despite knowing better, however, my lupus is here to remind me that it is still very much a part of who I am. 

How is it possible that I, someone who stresses to others frequently that “chronic means chronic”, can forget that my own lupus never actually went away?  How often do I hear participants confess with sadness that, when they have good days they feel like their old selves again,… only to cry when their symptoms return and they are faced to re-live their losses all over?  That constant battle between what their life was and what their life is now.  Although I often express gratitude to my body when it cooperates and allows me to find some joy in my days, I admit that I took for granted the ease of movement, the flexibility in dealing with daily hassles and the boundaries that I pushed to the point of tempting a full-blown flare.

After years of nothing to really complain about, my lupus has returned with the memories of the pain, stiffness, swelling and concern right along side it.  I will have to re-learn the strategies to overcome the constant pain signals because my tendons have become inflamed.  I will have to adjust to the swelling in my legs and the need to prop them up from time to time.  The blown blood vessels and the more frequent lab work to monitor my kidneys.  The realization that my morning stretches will be met with much more resistance both physically and emotionally, now that my aches will beg me to simply stay in bed.  My work will be more difficult and I will have to take more breaks, impeding my flow in writing and facilitating.  I will have to just slow things down after years of being able to operate at a much faster pace.  I feel myself digging in my heels and desperately trying to figure out what I “did” to bring it all back to this extent.

The fact is – and I KNOW this – is that lupus is a chronic condition with a constant cycle.  Out of sight does not mean out of mind.  Living as well as we can is possible and is important to aim for, but we are faced with the reality that we can never truly forget things aren’t right…and that hurts.  Regret that I took advantage of my blessing rises up within me and I talk it down as quickly as I can, knowing that my response to the symptoms right now will set the tone for how these days ahead will play out.

Taking on the role of victim or the spoiled child fighting back to the word ”no” will only create a ‘ me vs. it ’ perspective and will ‘loop’ right back physically to my immune system detecting more threat.

I find myself back to reliving my past and, quite honestly, am in a better position now after the years of working with, listening to and learning from so many others who have struggled, too.  I think this will be good, as painful facing it all again will be for me in many ways.  I have never believed that I was cured, but I did believe the worst was well behind me.  The timing for it all to return at the beginning of the year couldn’t be more appropriate.  Nothing truly changes for me as I take one day at a time to meet an objective that I want to reach.  I will create my days working to reach an immediate reward that will help me face my next day with a little more hope.  I didn’t deserve this or really even earn this recurrence, because my health is a cycle of symptoms, seen or unseen, that I need to remember and respect.  What it does give me is the opportunity to get through it all successfully, again, and reminds myself of that strength residing within me that I had forgotten over these past years. It’s this simple reminder, not my lupus, that has been my biggest gift this season.

I am wishing you all many gifts, lots of hope and peaceful insights touched with joy throughout the New Year~

I offer both in-person and online Discovery Sessions that focus on wellness – not just illness, but the overall concept of health as “…a state of complete physical, mental and social well-being.” (Straub, 2012)  If someone wants to look at their relationships, their work, their feelings about their health challenges, or simply wanting to open up to learning more about what is going on “inside”, the Discovery Sessions are a quick, easy and non-therapeutic (meaning they aren’t therapy) activity to tap into your intuition.

For PFAM, I did a session myself on addressing the theme on using images to ‘scrapbook’ my illness.  Below, you will see what you would do on an online Discovery Session with me.  The sessions only allow five minutes to put together the collage – that is important.  We want to tap into our intuition and choose images before we have a chance to block them out or think too much about them by bringing in our feelings, perceptions, concerns and so forth.  Every session begins with a prompt we come up with when talking before hand and, for mine today, I chose “How do I see my illness?”

Here’s what I came up with:

My notes that I took during the session:

“This image set offers me more image-reference rather than explicit photos, which made this session more reflective. Lots of blues, surprisingly more serene while doing it and images chosen imply it.

• Action refers to work, which is constant with C.I.
• Middle image is ripe tomatoes, I choose to represent setting seed.
• Smallest image of hospital bed acts as a constant reminder that floats above everything.
• Image showing invisible illness among visible social ties.
• Are those ruins or indications that over time I’ve been worn, but still here to be marveled at in terms of achievements?
• The colorful salad represents both nutrition, that I am what I eat, but also the ingredients I need to constantly choose to make my life the healthiest it can be.
• The images of the swirling circles, of course, represents my immune system that is involved with the work I must do. It interacts with the level of visibility I choose to have and the seeds I plant every day for myself and those around me.
• Notice the unintentional direction that seems to swirl towards the hospital bed, but is distracted from reaching it due to the other images it overlaps. Tells me I still can make a difference in my overall health direction.”

 (C.I.= chronic illness)

Again, these sessions aren’t therapy, even though they have therapeutic properties.  I am a wellness facilitator, which simply means I organize the setting and coordinate the process, but the participant – you – choose the image meanings, define the connections, and take from it what you want to use.  My role is in simply asking the questions without any expectations or judgment.  I supply the momentum to assist you in exploring what you want to learn from you yourself. Who better to answer your own questions?

I am offering these one to one-half hour online sessions for only $15 throughout December and January,  because I want anyone to have a chance to take part.  It is a wonderful, self-care opportunity to play and learn, without concerns of lacking ‘creativity’.  We didn’t worry about that when we made our first collage in grade school, so why stress out about it now that we are all grown up?  That need to explore is still within us, but we’ve had many years to build up our barriers and walls of fear.  If you have ever spent time with grandchildren or your own children and loved how carefree they are when creating, that is what these sessions can offer you, too.

This is the season for joy~ and online Discovery Sessions are just one more opportunity to create some for yourself (or a friend) who could use a little lightness in their day.

In case you don’t already know, I simply cannot get myself to sit still and meditate.  The whole idea of being present in the moment is a tough pill to swallow.  With the multiple, crushing blows I’ve had happen recently— health and otherwise—I figured it was time to more seriously explore more options.

Let’s face it, autoimmune disease and stress go hand-in-hand, and with life being hectic and chaotic enough, I know I don’t need to add more to the mix with my outrageous need to “do it all and perfectly” belief system.  Although there are specific mindfulness trainings and therapeutic practitioners available to guide us in exploring this practice more fully, I offer my laymen’s version of what little I’ve been doing on my own.

Mindfulness practices are exercises to focus on the present moment in a non-judgmental way.  Stemming from Buddhist spiritual beliefs, practicing mindfulness in the Western world falls more into the positive psychology realm as a form of emotional self-care.  By paying attention to my breathing and setting aside any thoughts that are not associated with my focus of the moment as they come into my mind, I practice paying attention.  By doing this, I not only can slow down my oxygen needs, my heart rate and calm down my system’s fight-or-flight reactions, but also give my entire body a loving time-out…all without having to sit in a lotus position.  There are three activities where I use this increased attention practice.  I’ll only talk about one for now:  focusing on sleep.

I have incorporated being more mindful into my night-time prep to help improve my sleep.  By focusing on what I do, why I do it and paying attention to the details like the sound of water, the sensations like washing my face or brushing my teeth, it is amazingly calming.  When the thoughts of what I didn’t get to on my to-do list show up, I simply give myself permission to deal with it “later” and get back to paying attention to preparing for bed.  I cannot tell you how this simple ritual has improved my quality of sleep.  My brain can go a mile a minute if I let it and it has often caused me to wake up or not sleep at all, creating more pain and negative moods the following morning.  During the three weeks I tried it out, I tracked 50% more hours of sound sleep, better mood mornings and more energy.  No extra time, no special equipment, done right in my own home while doing what I normally do anyway.  Just a shift in how I go about it made a world of difference.

In the Living Well with Chronic Conditions workshops (Oregon’s name for the Stanford University’s Chronic Disease Self-Management Program or CDSMP) available throughout Oregon, you can pick up some easy-to-do practices including breathing techniques, progressive relaxation, and guided imagery which all fall under a similar realm of wellness care.  They take some time to practice, but are so unbelievably easy and shown through research to be effective in improving health outcomes by connecting how our minds and bodies interact together.  With autoimmune conditions, that “auto” part is of particular importance to us and more studies are beginning to show that even though our immune system, as well as other automatic systems that keep our bodies functioning, acts without us having to think about it, we can influence them in ways to take better care of ourselves.

Practicing some mindfulness on positive activities that we do every day like preparing for bed (or simply scheduling a few minutes of taking some deep, focused cleansing breaths) can be the most loving thing you’ve done for yourself in quite awhile.  Try to bring more in-the-moment attention into your days, particularly as the holidays approach, and see if creating a mindful ritual can treat you to some healthy kindness.  You deserve it!

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It’s October here in New York and I can already feel the chill in my bones. Not a good feeling for anyone, but especially for fibromyalgia sufferers. The thing is – I know it’s going to be a long, cold, winter, but what am I supposed to do, curl up in the fetal position until May?

I can’t do that and neither should you. In the winter months it’s especially important for you to move.  You must keep that blood flowing and keep those muscles and joints loose. Now, exercise won’t be as easy or as comfortable as in the summer months, but it’s just as important to your fibromyalgia treatment. Your two biggest obstacles will be motivation and the cold weather.

So here are 3 quick tips to put you on the fast track to exercise and health this winter, you can do it!

Who has the motivation to exercise in the cold?  No one. The secret is to look past the winter. Don’t concentrate on the winter months.  Instead begin to prepare your body for the spring/summer that is coming. Where do you want to travel this coming summer? What activity have you wanted to do for a while?

Go to your calendar, mark the date, and exercise towards that goal.  As you exercise, picture that goal clearly in your head, focus on it, and believe it. Your mind will always look to accomplish what you truly believe in.

Your second road block will be the cold temperature. In the summer months I like to exercise in the early mornings. Winter – not so much. The winter mornings are always nice and chilly, not a good time to exercise. So instead I will get in my workouts after I have been up awhile and loosened up a bit. What usually helps? About a cup or two of Green tea. Not only will it warm you up but the little caffeine it has will give you the extra boost you need to get moving.

No sunlight? Don’t forget your vitamin D. Vitamin D is bountiful in the summer months as we soak it up from the sun. In the winter it’s a little harder to feel the sun. A good vitamin D supplement should help keep your immune system nice and strong. Exercise will not only keep your body loose this winter, it will also strengthen your immune system.  Fibromyalgia plus a cold is never a good thing.

Bonus Tip: It’s called the “Law of Expectation”.  It means focusing on expecting good things in your life. Forget about expecting more pain and fatigue. Make an effort to expect good health and a bright future.

As always, remain positive this winter and know that summer is just around the corner, so start planning…

Eric Suarez, CPT.

www.fibromyalgia-fitness.com

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Eric Suarez is a Certified Fitness Trainer and the owner of Valiant Personal Training in New York. He is the founder www.Fibromyalgia-Fitness.com and the author of new book -Fibromyalgia Fitness, 12 Weeks To A Healthier You!  He is offering a discount on his book to MLWT members and I will be posting more information about those details here very soon.

Since 2008, Eric has been helping fibromyalgia sufferers gain control over their symptoms by using simple functional exercises and healthy eating.  You can contact Eric directly at eric@fibromyalgia-fitness.com  and follow him on Twitter at @Fibro_Fitness.  Stop by, consider signing up for his e-newsletter and be sure to say hello.

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. 

A quick note about our LFA Pacific NW Chapter’s webinar today~ “Living With Lupus” featuring Philip Moberg, MD out of Seattle.  He will be offering an overview of the disease and its many forms, the diagnostic process, common symptoms and current treatment options. 

This is a great opportunity for you to reinforce or clarify your current lupus management, the information you have come across or explore some of the questions you may have about your lupus.  This is also an excellent way for those of you, who may know someone with lupus, to learn more about this disease and better understand some of what you don’t see that goes on underneath their surface.  Although questions need to be submitted two days before the lecture (sorry for this late notice), you can still submit them for follow-up by emailing info@lupuspnw.org.

To listen in on the lecture, dial the toll-free Lupus Inform number:

(866) 516-3949 and enter the participant pin number: 7223925#

If you miss this live broadcast, a taped version will be available for 60 days.  Beginning two days after the lecture airs, you can listen by dialing (866) 453-6660 and enter the same pin number 7223925#.

The next PNW LFA webinar will be on August 17^th at 5pm and will cover nutrition tips on how using a healthy diet can help manage and reduce your lupus symptoms, as well as increase your overall well-being.  Presented by nutritionist Amy Putiri, MS, CN, you will offer advice and information that you can apply to your daily nutrition patterns.  Remember to submit any questions to the PNW Chapter by August 15^th at 5pm.

Take advantage of this opportunity offered by our PNW Chapter.  I will soon be introducing you to the new President/CEO, Mary Prudden,so that you can meet this dynamo at the helm.  She has great things in store for us here.

“You grow up the day you have your first real laugh at yourself.” – Ethel Barrymore

In April, the MLWT book discussion group on Shelfari.com hosted Carla Ulbrich’s  book  How Can You NOT Laugh At A Time Like This? (Tell Me Press, 2011), where Carla herself joined in.  I was drawn to this book simply because I strongly believe in the value of humor as a healing force.  Anyone out there offering me an off-beat way of looking at life with a chronic health condition is numero uno on my list. 

This month was Lupus Awareness Month and in the past I’ve usually jumped on the band wagon to promote the services, programs, websites and blogs that I think are beneficial for those of us out here living it day in and day out.  However, a strange thing happened on the way to my blog this month, … 

I know I’m a coordinator for a network aimed at linking people, service programs with information about lupus, but I just couldn’t muster up the motivation this year.  I really wanted to celebrate us as whole individuals and find the lighter side to life with lupus, but I have fallen flat in the past when I’ve offered opportunities in having some fun with the lupus trials and tribulations during a time when everyone truly wants to take things more seriously.  I know we struggle and want to be heard, but I really had a hard time with giving lupus the spotlight.  I wasn’t alone, either.  After writing (and working) for lupus advocacy and awareness for the last three years straight, I find myself with many other veteran health bloggers who are expressing a need to regain some perspective. 

I credit Carla and her book for my resistance to give lupus too much air time.  Her book puts living with lupus right into our own laps. This mirrors my shift in what I do here and I heard what she had to say loud and clear.  Many books out there speak about the challenges faced when seeking out quality care or figuring out how to deal with strange symptoms.  However, these books usually appeal to the readers with a sympathic undertone as if we’re at the mercy of our health.  I didn’t get that from Carla, even though I am certain that she is a very caring individual.  She connected with me through irony and that was refreshing.  I tend to deal with personal stress in a more problem-focused, instrumental way initially.  I prefer to deal with the lupus first and not reflect on how I respond emotionally to it. 

Rather than being a how-to book on surviving lupus, Carla’s book focuses on weighing the necessary evils of life with a chronic illness.  Yes, medications aren’t the wonderful panacea Big Pharma would like you to think they are, but treatment options have come a long way in offering us something to consider in order to gain some balance.  Yes, eating more healthy and being very conscious of what we put into our bodies is important, but it isn’t easy and will take a lot of work that will be worth it in the long run.  Yes, life with a chronic illness is crappy, but to continue to carry that perspective in your heart and mind every day will take its toll on you in more ways than a black cloud over your head.  It may mean your health will only get worse. 

She writes about the no-nonsense stuff we all experience with any health challenge.  Personal choices in nutrition, medical care and treatments, finances and work, relationships with others and ourselves, the value in educating ourselves with options and being responsible when making decisions.  And, underneath it all, Carla delivers her thoughts not as a know-it-all or health guru, but as a gal you love to have with you on a girls-night-out.  You know, that tone or feeling of being a little rebellious when you’re out with your friends looking for some fun, while needing to connect with the people you trust to divulge the ugliness life can bring into your life?  When you can announce that sweat pants are your favorite thing to wear lately and then mention you’re frustration in having to admit it to yourself, only to find that your friends are nodding their heads in unison. 

I’m grateful to Carla for dropping by and taking part in the book discussion.  I’m even more grateful to her for offering me a book that I can return to over and over to read when a girls-night-out isn’t in the energy cards for me at the moment.  She backs up her points with research that is easily traceable and from quality sources.  She takes the temptation to focus on being victimized by the disease and reminds us to re-focus on being our own best friend.  She points out that this world is full of people who either mean well or just won’t get it, then she follows up with some good tips and recommendations to do for yourself that will leave those people standing in your dust.  We can’t do much to change others, but we can do a lot to change the way we choose to take care of ourselves. 

Her book’s title is perfect and she writes about lupus in the truest sense of irony:

By definition, irony means using words that communicate the opposite of a literal meaning.  In her book, Carla writes about lupus as a hellish, unfair and isolating experience and then offers us her perspective where she suggests that living with it can actually be funny, victim-free and an opportunity to appreciate the valuable relationships in your life. 

Beginning with the one you have with yourself.  Let go of some of that pressure from your own emotional build up with a laugh and allow yourself to recognize how ridiculous some of your challenges are for you.

 Then, get busy.

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You can also find Carla online at Carlau.com and The Singing Patient.com , as well as Facebook .

My friend Jo-Ann has graciously offered her experience with us today~

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My Lyme Disease Story

The tick bite

A little over 9 years ago I was bit by a deer tick. It was in me less than 24 hours, most likely less than 12. I had no “bull’s-eye” rash at the bite site. It wasn’t until weeks later that I started having symptoms.

At first it was my right ankle. It swelled up and hurt to put any weight on it. I went to the emergency room where the doctors took X-rays and determined that I had not broken anything. They surmised that I must have sprained my ankle even though I had no recollection of any trauma to my ankle. I hadn’t twisted it or dropped anything on it. There was no logical reason that my ankle was hurting. The doctor at the ER sent me home with an air cast and anti-inflammatory medication and told me to elevate my leg.

After several weeks, the pain in my ankle did ease up, but it was replaced with pain and swelling in the opposite knee. Again, I could not imagine why it hurt so much, and was sent home from the doctor with anti-inflammatory medication and no real explanation for the problem.

By the time the pain in my knee eased up, my wrists had started to swell. I couldn’t imagine what the heck was going on with my body. I walked around with wrist guards on for several weeks thinking it must be carpal tunnel from all the typing I had been doing. Around this time, Eric said to me, “Maybe it’s Lyme Disease. You were bit by a tick a couple of months ago; maybe you should go for a test.”

Lyme disease was the furthest thing from my mind at the time, but it did make sense.  The symptoms kept moving from place to place and it really couldn’t hurt to be tested.

I went to the local Urgent Care Center to get a quick Lyme test. The doctor there was nice and efficient, and told me they would call me with the test results. A few days later the doctor called me to say that I had tested positive for Lyme disease and that he was calling in a prescription for Zithromax. He told me that I should feel better in a couple of weeks.

At the end of week two I was back at the Urgent Care Center.  Not only were my wrists swollen, but now my ankles and feet were swelling as well.  The doctor ordered another round of Zithromax and told me to come back if I wasn’t feeling any better.  Two weeks later I was back.

At this point the doctor said to me that this was beyond his level of expertise.  He said that he could send me to an infectious disease specialist or a rheumatologist.  He felt that the rheumatologist was the best choice because he could treat me for Lyme disease or anything else that was causing all this joint swelling.  He set up the appointment for me and sent me on my way.

Had I known then what I know now, I never would have gone to the appointment.

My first visit with the rheumatologist

The rheumatologist was a nice man with very good credentials. He worked with Brown Medical School, teaching our future rheumatologist. He frequently gave speeches and workshops for the Arthritis Foundation.

He listened to my story and took my medical history. It is important to mention that the interview process ended when I told him my mother was diagnosed with rheumatoid arthritis (RA) when I was 10 years old. He then examined me and told me that he thought that I had rheumatoid arthritis. I protested because all my problems started with Lyme disease, and I wanted to know he was sure it was RA and not Lyme. He said was that he wanted to do some more testing but he was fairly certain that it was RA that was causing all the swelling. He told me that we needed to do something about the swelling before it caused more damage and he prescribed Prednisone. He told me I would feel better.  He gave me slips for blood work and told me he wanted to see me in 2 weeks.

When I went back to the rheumatologist, he told me that the test results showed that I had rheumatoid arthritis and that it must have been a false positive Lyme test. When I again questioned the fact that the Lyme test had come back positive and that all these symptoms had started after a tick bite, he said that it was just a coincidence that the symptoms appeared then. I wasn’t completely convinced that I had RA, but I was feeling better and I had been in such pain before… So I decided to give him a try and see what happened. I mean he was the expert, what did I know?

Over the next several years I was treated with steroid injections, steroid pills, and Methotrexate at increasingly higher levels. I was told to be patient that getting the right medication can take time. Every time I brought up Lyme disease I was shot down. He was more convinced than ever that I had RA even though I was not improving much on the Methotrexate.  He suggested that I try biologics to get some relief, and, I don’t know why, but that was it for me. I fought him on it. I didn’t want to assault my body with any harsher medication.  After several disagreements on the subject over the next couple of months, I decided it was time for me to take a break from this rheumatologist.

I wasn’t sure what to do next, so I started weaning myself off of the Methotrexate. I didn’t really know what it felt like to be off of the stuff. I didn’t want to shock my system and go completely off the drug, so each week I would take one less pill until I had weaned myself completely off the drug.

It took a while, but the symptoms returned. My legs looked like tree trunks and my wrists were pretty bad too. I knew I had to do something, but at this point, I wasn’t sure who to turn to. I tried a different rheumatologist and left his office in tears. He was good friends with the rheumatologist I had left and couldn’t understand why I was looking for a new doctor. Finally I found a rheumatologist that was supposed to be a Lyme specialist. I thought that this was the solution I had been looking for.

This new doctor requested all my medical records before I could schedule my first appointment. She wanted me there 20 minutes before my scheduled appointment so that I could fill out all the medical history forms. She went over everything with me and asked a lot of questions. She agreed with the first rheumatologist, that I had RA, and she mentioned that she had had some luck with patients on Plaquenil.

I figured that if this doctor who was supposed to be a Lyme specialist felt that I had RA, then I must have rheumatoid arthritis. And so I did what the doctor told me and took what the doctor said to and I did see some improvement after adding the Plaquenil to my medication cocktail.

I think that it is important to note that during the time I was seeing these rheumatologists, I also had a primary care physician that was aware of all of this. She also treated me for other unusual symptoms that I would have from time to time. I was told I had acid reflux and prescribed medication. I was told I had migraines, even though my symptoms were sensitivity to light and sound with no pain. The constant ringing in my ears I was told must be from anti-inflammatory medications. The extreme fatigue was blamed on RA.

The events of last summer changed everything

On the third of July our youngest son contracted the H1N1 virus. Because I was taking immunosuppressing drugs, I needed to stop taking them immediately and start taking anti-viral medication for 3 weeks to make sure that I did not contract the swine flu. Shortly after completing the Tamiflu, I came down with a bad case of bronchitis and was put on antibiotics and was told to stay off my immunosuppressing medication. I was told to continue taking the Plaquenil. I no sooner finished the antibiotics when H1N1 struck again at my house and I was back on antiviral medication. And to top it all off, again I got bit by a deer tick and tested positive for Lyme disease. The doctor put me on Doxycycline for 6 weeks because of my compromised immune system.

This bout of Lyme disease was like no other that I had ever experienced. Three weeks into treatment the symptoms got incredibly worse. I thought I was dying. When I called the doctor she didn’t seem to know why I was feeling so bad but insisted that I continue the doxycycline. I did what I was told and the symptoms did improve. When I finished the antibiotics I was told to start taking the immunosuppressing drugs again. Being the dutiful patient, I did as I was told. Within a week of starting the methotrexate, the Lyme symptoms came back with a vengeance. I scheduled an appointment with the rheumatologist.  She took one look at me and knew that I was sick. I told her I thought it was Lyme disease. She ordered a new Lyme test and a battery of other tests as well.

About a week later, my primary care physician’s office called to let me know that I had a positive Lyme test and wanted to confirm that I was being treated for Lyme disease. I was confused. Why didn’t the rheumatologist call and get me on antibiotics?

I called the rheumatologist office and asked for an explanation. The doctor told me that I did not have Lyme disease. I wanted to know why the other doctor thought that the test results were positive. And here is when I started to get really nervous. She said that she didn’t expect those results. She said that it could not be Lyme disease; it must be a cross reactive protein. I then wanted to know why I was experiencing the same symptoms that I had when she told me I had Lyme disease. It didn’t make sense. I felt like I had Lyme disease and I had a positive Western Blot. It didn’t seem complicated at all.

She wanted to do some more testing and I agreed. She said Lyme disease likes to hide out in a certain part of your brain and so she ordered an MRI. I was tested for everything under that sun and the only thing that came back positive was Lyme disease.

Because the rheumatologist was in my opinion trying to prove that I did not have Lyme, I went to my primary care physician and asked her what she thought.  She said that she thought that there was no harm in putting me back on Doxycycline and if I felt better than more than likely I had Lyme disease. If I didn’t feel any better than it probably wasn’t Lyme. That made sense to me.

I started a new course of Doxycycline and not only did the Lyme symptoms get better but the swelling in my joints that had been bothering me for the past 8 plus years disappeared. I was walking without a limp. I actually had a sashay to my step. One day I was going about my normal daily activity and it hit me. It stopped me dead in my tracks. This is what I felt like before; before the rheumatologist, before Methotrexate, before the tick bite that changed everything.

I began to cry. At this point I was sure that I had had Lyme disease all along. It made sense. I had been off the medication that was supposed to fix my joint pain and swelling and it was replaced by antibiotics that have taken away all my symptoms.

I had an appointment with the rheumatologist. She wanted more testing and if they did not come up with a solution, she wanted to do a lumbar puncture. Logic did not seem to be working with the woman. To be honest every time I brought up Lyme disease she looked scared, especially when I suggested that I never had RA in the first place.

I decided that I was no longer going to go back to the rheumatologist and I needed to find a doctor that knew something about Lyme disease. I spent months doing research about Lyme and rheumatoid arthritis. I learned that I needed a Lyme Literate MD (LLMD) and I asked anyone and everyone if they had some advice on how to find a doctor. I took all the information that I had gathered and narrow it down to 2 doctors and then I did something I should have done from the very beginning. I trusted my instincts.

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Post-script:

By the time I was able to find a Lyme literate MD, I could no longer walk without help.  I spent all my time in bed. I could not roll over in bed without help. I was in constant pain. I truly thought I would die before I made it to this doctor. Not only were my joints swollen but my legs and face were swelling as well .My body had begun to twitch. I was really scared.

Within a few months on antibiotics the inflammation in my body had been reduced by half and I knew that we were on the right track. I am now 8 months into treatment. It has not been easy and because I spent so much time on immuno-suppressant drugs it will be a long hard battle. The drugs that suppressed my immune systems made it easier for the Lyme bacteria to become entrenched in my system. However right now I am able to walk without help, the pain I was experiencing has been reduced by half and I am on my way to a healthy life once again.

The most important lesson I have learned during this whole experience is that I should always trust my instincts. I didn’t before and I will never make that mistake again.

I hope this post will help others.  As of today I have been contacted either on LivingRheum.com or LymeWarriors.com or by email by almost 70 people who have stories similar to mine. The more information out there the better.