I am always amazed at how difficult it is for me to return to writing here after a long absence.  Why is it so hard to get motivated to be willing to spill my thoughts into the cosmos?  Is it fear of scrutiny or rejection? Is it the sense that no one cares anyway?  Is it an exercise in futility, because no matter what I think of things…nothing changes?

Since my last post, a whole lot of crap has happened and, quite honestly, I just didn’t want to relive or process any of it. Yet, moving on wasn’t possible either…I felt stuck in the muck and, as it is when you’re standing in quicksand, moving just gets you in deeper.  Deeper is not where I wanted to go.

This heron is a daily visitor in my backyard, mainly due to the 10-inch goldfish that also reside there.  We have a mutual distrust and lack of respect for each other.  We are a threat to each other, aren’t fully understood by others and have long, weird necks.  S/he  looks prehistoric and I, at times, feel like it.

Life gets ugly and sometimes we have to take a minute (or in some cases, are forced to) and look more closely.  How easy it is for me to whine about the chronic stressors and stupid events that make my life difficult, inconvenient and frustrating.  Traffic, relationships, financial challenges, lupus and other health symptoms, weather, work.  The feelings of hidden conspiracies and karmic punishment that don’t simply smack me in the head, but actually compound with every complaint I utter out loud.  My constant manipulative expectations where I believe that if I just meditate for five minutes, then Providence will take pity on me and leave me alone for awhile.

Bargaining fruitlessly until I burst into tears.

I took this picture of my visitor today and, while loading it on my computer, I didn’t see the same bird.  I found myself in awe.  This bird, with its screeching cackle, scraggly feathers, ill-intent and lack of respect for my personal boundaries, is actually very impressive.  S/he (I haven’t bothered to explore which, because it doesn’t matter to me) lives as it is and for all the grief it must endure for its appearance and behaviors, still finds a reason to endure.  It isn’t outwardly friendly or trusting and a pretty private being.  It makes its way despite it all.  It squawks…then slowly moves to another location where it stands with amazing patience to continue its life as it is.  Nothing more.

As a human being, I struggle not with life, but what I choose it to mean to me.  There is my dilemma.  Stressors are only stressful when I deem them to be.  Frustration occurs not from the event, but in how I chose to deal with it.  What I see as ugliness in life is actually a reminder that I’m not living…I’m reacting to life and, clearly, I am not happy about that.

I need to take the cues from this fowl visitor and learn to squawk, move on and practice patience.  Ugly is as ugly does.

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.

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.

One of the many things I’ve learned about the fibro community is that pain is a strong motivator.  With lupus, pain is sometimes present or may be more present in our days than we would like it to be, but not one of the key symptoms associated with our illness.  When someone lives with pain, it affects and changes us to seek out answers, information, resources, or alternatives at a level that we may not be naturally inclined to act.  As someone living with lupus and looking just fine, it is easy for me to decide not to talk about my health.  I can blend in without too much effort, keeping the internal chaos as invisible to myself as it is to the person standing in front of me.  However, I started out with a great deal of pain, before I knew that lupus was ravaging my kidneys, and I know that I showed my pain in the way I attempted to walk, reach, sit, smile…live.

I have been granted an opportunity to meet with many local people and have become part of the strong Fibro community here in the Portland Metro area.  If you are interested in meeting some of them, many are members of their Ning community that I have listed down in the right margin here under “MLWT Networks.”  I receive emails from locals living with fibro (as well as worldwide) on a regular basis, more so than from people living with lupus.  They speak about what they are looking for, what they are doing and how they are thriving in spite of their constant pain.  Many are open about asking for help, even if it is a difficult thing to accept at times.  They welcome visitors to their groups in order to ease the discomfort a new environment can create for many of us.  The emotional wall seems much more flexible for these individuals and, I suspect, their life with pain moves them to keep connected to something or someone with hopes to mute their body’s hurtful signals to any degree possible.

Although my mother lives with, what she has been told by her doctor, “secondary fibromyalgia”, I still don’t ‘get it’ and I know I truly won’t ever fully understand what she goes through.  I do, however, want to learn more (and hear more) about as many fibromyalgia experiences as possible, because I know I will be able to better appreciate the information I receive coming from the ‘trenches’ more than I will from a research article or medical/pharmaceutical presentation.  I want to be here for my mom in a way that will actually acknowledge her unique experience and offer her the support that she needs, when she needs it.

To honor those many people living with fibro that I have met through MLWT, I will be hosting two book discussions in a row that focus on living with Fibromyalgia.  The first book is FibroWHYalgia, by Sue Ingebretson, and our discussion on Shelfari.com will begin October 1st.  To kick things off, Sue has offered a free, signed copy for the lucky winner.  Even if you don’t get around to picking up a copy of the book right now, you can still join in on the discussion and we encourage you to do so.  It’s a chance to have a conversation that is guided by the topics covered in the book and an opportunity to perhaps learn about additional resources that may be of help in your own fibro experience.

Here’s how you can get the FREE copy of Sue’s book for the discussion:

• The contest will run from today September 15th until 11:59 PM Pacific time, Friday, September 23rd.
• The winner will be selected in a random drawing on September 24th. I want to keep this give-a-way free of strings requiring you to do anything to win.  However, since this is for our MLWT Book Discussion group, you will need to register a free account with Shelfari.com.  It is a great place to meet others reading the books you are and MLWT isn’t the only group.  Authors are also beginning to sponsor their own discussions, so it is worth the effort and a great way to keep up during the winter reading months.
• I would also like to add your email addresses to my new seasonal enewsletters (The MLWT Muse) that highlight wellness updates and resources to know more about, both local and outside ofOregon.
• I will contact the winner via email on September 24th, and they will have 48 hours to reply in order to claim their prize. (So be sure your email address is correct!) After 48 hours I will move on to another winner.

To enter this give-a-way:

1. Sign up for the MLWT Mailing list (directly to your right on the MLWT website) and leave a comment below letting me know you’re signed up.  Then,
2. Sign up for the MLWT Book Discussion Group on Shelfari.com .
3. If you are already registered for either or both of these, just leave a note in the comments here to enter your name!

Once the winner is chosen and has claimed their prize, Sue herself will contact them by email with her congratulations and get their mailing address for the prize copy.  The winner should receive it in time before the MLWT discussion really picks up.

Best wishes to you all for the win and I’m looking forward to the upcoming discussion!

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To learn more about Sue and her book, you can find her on Twitter (@SueInge), her Facebook fanpage , and her book’s website www.FibroWHYalgia.com .  She is also an MLWT Guest writer and you can enter her name in the search field on my website to bring up posts that she has contributed so far.

Yet, what about the young adults out there who can benefit from learning about health management early on in their diseases and symptoms?  They don’t want to join up in arthritis exercise classes with their grandma or attend a support group with women and men as old as their own parents.

This is true for middle-aged patients, too.  They may be new to diagnoses, early on in their disease progression or things may have evolved into new symptoms where they still battle with fear, uncertainty and confusion about their future. Yet, they don’t want to face things full-on by hanging out with geriatric patients well beyond parenting or full-time employment.

I’ve been researching online health-focused social networks in trying to gain some understanding of how unique the needs are of the participants and whether those needs are being met effectively.  Many times, I will find older patients becoming almost like ‘mother’ figures (of which I have been called myself) and their roles focus more on guidance rather than actual peer support.  That is where finding networks that can match up participants or are designed specifically to draw in certain age groups can help make health support more relevant.

We already have medical providers who are older, parents who are older and meet up with workshop or class participants who are generally older.  It is important to find friends who fit in more closely with who we are as an individual who happens to live with illness.  We hear it often, but it’s true:  we are more than our disease.  That is even more important to recognize in our youth as we face years ahead of us. 

I would like to introduce you to healKick~ and Rachel is here to tell you more about it.  I think this resource offers us an option that may fit our needs for peers to walk along side us rather than lead us on a path already traveled.

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My name is Rachael and I am so excited to tell you about a great new resource for young people with Lupus and for chronically ill young people everywhere. It’s called healKick.

HealKick is a social networking site for young adults in their 20’s and 30’s with neuro-immune illnesses like Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Chronic Lyme Disease, Multiple Sclerosis, Myalgic Encephalomyelitis, Lupus, Rheumatoid arthritis, Sarcoidosis, Multiple Chemical Sensitivity, and Mold-related Illness.

As a chronically ill young person myself I know how challenging and isolating it can be. Dealing with the sickness is bad enough but when the friendships die and the loneliness hits, a bad situation seems even worse. The good news is that I have finally found a place where I feel accepted and understood again. I have a place where I can talk about my newest bizarre symptom, or the funny thing my dog just did. It’s a place where I can just be me. And that place is healKick.

The site was created to bring chronically ill teens and young adults together in a way that a traditional support group cannot. In a traditional support group, one condition is represented and members only have limited time and ability to connect and form connections.  At healKick there are multiple similar conditions represented but all the members are united by age. And there are many exciting opportunities to connect with others. It is a full social network with all the features you would expect, plus so many more.

There are message board-style discussion forums where you can discuss condition specific issues or your favorite TV show. You can chat with any of the online members either with traditional text-chat or our new voice/video chat room. You can choose the language of the site and connect with other users around the globe. There is a points system so you can earn prizes just by being active on the site. Search the site or look at the member map to find other members in your area. Come for a special event like a movie night and then stay for the new friends that you make.

This is a great opportunity to find commonality with and learn from others with slightly different conditions. It’s also a chance to connect with people with the same illness and encourage each other along the journey. The best thing about healKick is that no matter who you come across on the site, you will always have something in common with them because everyone on the site is in the same stage of life. This creates a community of people that is easy to fit into. I speak for everyone on the site when I say that we can’t wait to meet you!

See you soon,

Rachael

Another option is to participate in a Portland-area focus group either this week or early next week~ they will only be in town for these interviews for a few more days.  Remember that the focus is on using naturopathic treatments that you may have included within your regular conventional treatment, such as acupuncture and Chinese medicine. I am coordinating the local focus group for them, so please call me at 503-616-4856 or email me at maria@mylifeworkstoday.com to register asap.

This is a wonderful opportunity to help bring awareness to our medical community that thinking outside the box offers more options for us in taking care of ourselves.

******Update:  We have scheduled a date and time for this focus group~ Thursday, July 7th at Beaverton Library.  The time frame is from 1-3pm, but there is opportunity to still be interviewed until July 9th.  Refreshments and a Starbucks gifit card will be offered for focus group participants.  We have a couple of spots left~it’s simply you telling the researchers about your use of naturopathic treatments and what part they’ve played in your wellness.

“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.

Leslie over at her blog,Getting Closer to Myself, fills us in on her dissertation adventures coming up this July and August in her contribution “Traveling (Alone) With Lupus And Rheumatoid Arthritis”.  Already a veteran to the travel scene, she knows all-too-well the toll it takes on her both physically and emotionally.  Adding in a new medication to her repertoire this time around, Leslie reminds us all that when we are living with chronic illness, we are never truly traveling alone.

Hayzelle echoes the reminder that summer vacations are meant to relieve our stress, rather than bring on more.  One of Hayzell’s goals for this summer is to travel in comfort and not let chronic pain get in the way.  At her site, possibilism.org, she tells about what she has learned and gives 15 great tips for traveling with less pain in her post “15 Tips for Painless Travel” .

Kimberly Kaye has chosen to celebrate the wonderful certainties of her life ~ such as family fun ~ and set aside the worries of all the uncertainties she’s facing right now with her health.  Some traveling to Kentucky, some coastal excursions, and lots of photo opps.  The name of her blog says it all: learn.love.live and you can read her summer mantra in her submission “Summer Plans“.

For me, I may get to the coast more often this year, now that one of my friends has been offered the opportunity to enjoy ‘retirement’ a little early.  I plan on taking advantage of her wonderful offers to stay over in Astoria and maybe meandering my way to other coastal places I haven’t been to in years.  I have also agreed to take my girls by train to Seattle some time and will be hosting a visit from a good friend I haven’t seen in years.  Even though she will be doing the traveling up from California, we will both be taking part in traveling back in time as we attend our 30^th (yeah, we’re that old) high school reunion.

I think the biggest trip I have planned next summer, though, is straight down…but in a good way.

I have decided to commit to raising donations for an organization called Leap For Lupus .  Since 2004, this organization contributes 100% of the funds they raise to research to the University of Washington Division of Rheumatology , as well as take part in the annual fundraising walk put on by the Alliance for Lupus Research (ALR).  Valinda Mitchell’s enthusiasm for diving and advocacy has proven to be infectious enough for me to throw out all sense of reason and take my own leap of faith.  Beginning June 1^st, I will be hosting a donation button on the site here for people to consider the following proposal:

I am committing to raise $500, which is my goal, up to August 1st, 2012.  I figure that all I need to reach that goal is to receive $10 from 50 people, but rather than simply ask for the cash, I am offering an opportunity for people to celebrate themselves, or someone they know, on the jump.

I haven’t figured out the specific suit set-up yet , but I envision providing ‘space’ on my suit to transfer photos, bios, wishes and so forth of individuals living with lupus.  I know that I am very fortunate to be able to physically take this leap and my way of sharing the experience with the many wonderful people who share my lupus journey here on the ground would be to take them with me.  I initially wanted to offer video of the trip down…again, I’m working on the details…and, if I can get someone to help me figure things out, I see a YouTube video in our future.  What you will definitely receive is a pic of your transfer on the day of the jump and a certificate to commemorate the event.  Stop by Leap For Lupus and learn more about these great individuals.  I hope you will consider joining in on this leap of faith with me and helping further lupus research for all of us.

For those of you who wanted to take part in today’s PFAM, but couldn’t make the deadline, this post can easily be added to if you still want in.