For years, I have explored the new, and sometimes renewed, methods by which we try to make some sense or gain some control over our lives.  What I’ve learned over time and have expressed here constantly, is that each experience with lupus or other chronic conditions are uniquely our own.  Although there is a benefit to building a network or personal support community to help us weather the daily challenges, we are always on our own in trying to make our lives work for us personally.

When I have the opportunity to facilitate health-focused brainstorming and problem solving sessions for individuals and/or groups, the words “isolation”, “fear”, “uncertainty”, “frustration” and “pain” are the most frequent words I write on the board.  When I facilitate Wellness Discovery Sessions, those same words come up time and time again through images. No matter what the health challenge (and not necessarily limited to the Portland,OR area), there appears to be dark clouds hanging over each of us every day…and not just threatening rain.

Having worked with organizations and non-profits over many years, the mission statement is very important for those working within the organization itself and for those of us in the community who are considering supporting their efforts with our limited time, energy and money.  I always encourage careful consideration when donating anything to a collective group claiming to offer “support” for health or “wellness” needs.  The best way to determine their integrity is to carefully study what they say, do and who they team up with, as it all relates to their professed mission statement.  I have seen my share of “non-profits” come and go, that have focused less on service and more on marketing or “piggy-backing” on other people’s work.  They eventually fizzle due to revenue or lack of community response and leave those of us still needing health support high and dry.

So, how do these organizations or non-profits know what to offer the community they serve?  Social media is a great way to learn through lurking and paying attention to themes.  And, as we all know about social media, there are a lot of people out there giving opinions, medical advice, selling products, venting frustration, judging each other, or connecting with like-minded individuals all over the world.

Organizations and health-focused non-profits are only going to work financially if they ‘market’ themselves in a way that either seems to work for other organizations( similar events and topics) or by using the ‘lingo’ and themes as their ‘key words’ to get our attention. These keywords and themes are then used in their marketing materials to draw us in – as well as our wallet.

Now, I want to return to those keywords I pick up at most of my facilitations with individuals living with chronic health challenges such as lupus.

Isolation

Fear

Uncertainty

Frustration

Pain 

If organizations and non-profits are marketing wisely, they will use both these and the antonyms (opposite of these words) to get our attention.  But, are these relevant to us regarding what we truly need in support or are they simply expressions of the feelings that represent our unmet needs?  Do we want people to support us in feeling better or do we want people to offer us viable, relevant options to care for ourselves?

Initially, I thought about using the ‘first line of the story’ activity to create as a sort of collective affirmation on we want to make for 2012.  A type of working mission statement, if you will, that is broad enough to cover everyone’s experience in some way, but is still a statement that can help lead our support need requests toward building useful resources.  We hear calls to support research in finding a cure.  We hear about advocacy opportunities in supporting legislation.  We are always hearing from people asking for money to support their efforts. Those bases are covered and many are important for us to take part in for ANY health treatment progress to be made.  But, for you personally – what is your call for?

Maybe moving away from a collective activity and starting with individually exploring key words that catch our eye throughout the day is the first step.  What words support our sense of self-determination, rather than our need? Are those feelings and needs burdening us because we choose that or are we responding emotionally to ‘outside’ forces?  Or, just as valuable and necessary, are these needs and feelings truly relevant to us, waiting to be addressed? 

What would you want to see in a brochure?  What would you be interested in reading through the many social media platforms – Facebook, Twitter, Tumbler, Ning communities, and so forth? Do these keywords describe your life?  Are these keywords what you are looking for from an organization or non-profit?  Are you willing to support them in perpetuating these keywords or would you prefer to have them help you redefine them?

Just as a note, and an important one:  I hear a lot of positive things come out of facilitation, too.  I hear amazing strength, courage, self-determination, hope, joy, community, potential,…and so on.

That is the main reason I do facilitation~ what I learn from listening to the stories of others inspire me.  What comes from the process or dialogues during facilitation astounds me and motivates me to create as many opportunities to bring people together to brainstorm, problem solve and build something as possible.  Yet, strengths don’t imply ‘need’ and, although there are plenty of non-profits out there that offer services focusing on needs, usually the marketing focus is more on these ‘need-focused’  keywords that keep their mission statement (and their organization) operating.

I invite you to take a minute or two and join me in thinking about keywords that you would put into a personal mission statement.  Brochures and fancy websites aside, building on your own personal ‘marketing’ will make finding those non-profits and organizations that truly support you in your wellness much easier~ while offering you an individually stronger (and longer-lasting) impact on your own life.

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.

Here are the three community requests and the responses I received – thank you to those of you contributing to the discussion!

Request #1: Some suggestions on how to respond to family/friends who question the inconsistencies of our symptoms (for example, “You were fine a half hour ago!”)

A few people recommended The Spoon Theory, a familiar tool using something tangible to reflect a measurement of how much energy it takes to get through a day.  Although not everyone with lupus experiences challenges with fatigue, using spoons (or I’ve also heard people use other things like tooth picks) is a good way to express loss that others can relate to.

On a similar note, I recently learned of a communication tool that a dear friend, and organizer for the Portland-area Fibromyalgia/CFS support group , Tamara uses to give her husband a signal for the day regarding how she’s feeling.  When her clear jar is full of the polished pieces of glass, she’s doing great.  As the day goes on, she removes pieces as needed and, without saying a word, he ‘sees’ where she is at a given time.  What makes this a wonderful way of communicating is that they both developed this language together and by taking out the need to exchange words taxes her less and strengthens their relationship more. Co-creating a communication tool that speaks clearly and compassionately is something maybe to ask your friends to take part in.

Of course, there is the standard communication tool of “I feel…” messages, as I was reminded by a graduate of the Living Well with Chronic Conditions workshop, Laurie.  These messages, with practice, help take some of the defensiveness out of a situation by focusing more on how we feel or the concerns that we have when something is said or done.  In the situation that prompted this question here, the member who sent me the email felt defensive immediately when her sister-in-law couldn’t understand what happened within a half hour that changed her energy levels.  She snapped back and wished that she had a better, and cleverer, response that wouldn’t have led to hurt feelings all around.  Here is an example of how a conversation might happen and how using these types of messages can make the same conversation go a little better for everyone:

Without an “I” message –

Sister-in-law: “You were fine a half hour ago!”

MLWT member: “So, what are you saying? That I’m making it up? Thanks for the compassion…”

With an “I” message –

Sister-in-law: “You were fine a half hour ago!”

MLWT member: “I feel like I need to defend myself when I can’t explain how much my body puts me through.  I really want to figure out a way of telling you how I feel so that we could understand each other better.”

The key here is that the MLWT member focuses on what she is feeling, thinking and wanting without using those dreaded “You” messages that feel great in spewing to others, but cause emotions to get away from us… leading to defensiveness towards everyone.  Whether the sister-in-law commits herself to actually help figure out a way to better communicate is out of the MLWT member’s hands.  First, and foremost, the MLWT member gets what is on her mind off her chest and maintains a sense of calm (managing stress) while coming up with an idea to ‘fix’ the situation (proactive and constructive). These messages may not feel very natural at first, but taking that extra minute to focus on taking care of you gives more opportunity for positive results than there would be otherwise. 

Finally, MLWT member, Janice, simply stated:  “Tell her to just smile and nod – people will never really understand what we’re going through.”  Good point, Janice.

Request #2:  Kitchen products that have good grips and are light weight

Here are some responses I received to this MLWT member request:

-OXO products

-Kitchen Kaboodle sometimes has great little tools, or any senior living source (Gladys)

-Arthritis Foundation website sometimes mentions products (Laurie)

Anyone else?

Request #3:  Any books that help mothers be supportive to their children who are struggling with chronic health challenges (preferably non-clinical)

I’m still compiling, but Universityof Michigan offers a great website that covers some really important points that you may be interested in.  It isn’t easy to find sources covering illnesses like lupus or fibromyalgia, but consider seeking out books and websites that cover areas like cancer (LOTS of books available).  Even terminal or hospice sources that discuss caretaking for communication tips. Of course, the National Lupus Foundation is always open to hearing your requests, offers topics like this in their webinars and has a book recommendation list  you may want to check out.

If you’re on Twitter and have some additional resource ideas, use #CIbook within your tweet and I’ll find it!  You are more than welcome to share them here, as well.

The Winter/Spring MLWT Musings enewsletter will be out in late February, so if you have any thing you want to put out there to the community members to help problem solve an issue, email me here and I’ll get it into the next edition.

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.

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!

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.

This Fall, the focus here at My Life Works Today! begins to broaden its scope and explore the common themes involved in living with chronic illness.

Initially, I started this network in 2008 to bring some awareness and resources regarding lupus at a time when very little was offered here in Oregon.  In 1998, I searched for local resources as I entered into a life with lupus and, in 2003, it was still difficult to find much of anything that felt relevant to my experience.  By 2008, however, I tired of the empty void and threw into the internet cosmos an idea, making use of the burgeoning social media to help me putOregonon the lupus map.  I had hopes to raise my voice and make the word “Lupus” more commonly heard so that when people Googled “oregon  lupus”, something – anything – would pop up.  It now does, along with the many other voices that have joined in, so my original MLWT project goal has been met.

Today, MLWT has evolved from a lupus patient-focused networking hub (pre-cursor to the online resources like Twitter, Facebook, Ning and other communities) towards a chronic illness health and wellness resource collective for professionals, programs, foundations, authors, advocates and service providers focusing on autoimmune and other syndromes or illnesses that are difficult to diagnose.  MLWT is for those living with health challenges that are often referred to as “invisible”, simply because the true pain and chaos we are experiencing with our health isn’t generally visible to others making it difficult for us to explain.

This next phase of the project will be to incorporate general wellness resources already available, both locally and nationally, in a more cohesive manner recognizing that there are more things about us in common than truly different when living with a chronic condition.  No matter what chronic disease diagnosis we have to accept, the common theme is that our health challenges are chronic and won’t go away.  There is often pain and repercussions from medications. There is need for daily exercise and movement, requirements for proper nutrition and access to mutually-respectful medical support.  These chronic conditions can be costly in many ways, but can be managed to some degree by taking care better care of ourselves.  My hope is to continue to highlight the tremendous talent, services, programs and resources we have here locally to consider and/or explore in designing your own personal wellness goals.

My Life Works Today! began as a statement reinforcing the idea that life with lupus forces us to manage our daily expectations in order to self-manage our health over the long run.  Lupus is what I know and I will continue to create this place of encouragement for those seeking a connection point to their own wellness possibilities.  The tagline, however, is changing in order to reflect the new emphasis:  Your Life.  Your Wellness.  Your Way.

I will write more about my new directions beginning September 18th, including online options for those living outside the Pacific Northwest.  In addition to changes in the MLWT program and on the website, the MLWT Mailing list will be activated to send out seasonal MLWT newsletter updates (four each year).  I will also be putting into motion the P.O.R.T program (People Offering Real Time) for those of you living here in Oregon and SW Washington.  As is with change, there are bound to be some bumps along the way.  I’ve been battling a number of them for the past month and hope I’ve cleared a smooth path to get us going.  If things don’t look right, aren’t received or don’t work, you know my email…just let me know.

I do appreciate your patience and support during this exciting time for all of us.

Maria

Even if you don’t live on the coast, what a great reason to go and escape this heat!

September 10-15, 2011

 Arthritis Road Show 

Serving the communities along the Oregon Coast

The Arthritis Foundation is bringing free resources to the communities of theOregonCoast!  Hear from rheumatology specialists, orthopedic surgeons, and get a free osteoporosis screening.

Program Dates and Locations

Saturday, 9/10           Astoria – Holiday Inn Express

Sunday, 9/11             Tillamook – Tillamook Bay Community College

Monday, 9/12             Newport – Oregon Coast Aquarium

Tuesday, 9/13            Yachats – Adobe Resort

Wednesday, 9/14       North Bend – North Bend Community Center

Thursday, 9/15           Gold Beach – Curry Public Library

Program Schedule:

6:00 pm  -  Registration & Resources

6:30 pm  -  Presentations and Q&A sessions

7:30 pm  -  Program Concludes

To RSVP, Please Contact:

Cynthia Bishop, OregonPrograms Coordinator

Phone:  (503) 245-5695  Toll Free:  1 (888) 845-5695

Email:  CBishop@arthritis.org

Sponsored by:

Pfizer

Amgen

rebound Orthopedics & Neurosurgery

Janssen

Abbott

Arthritis Foundation

The urgent note I want to mention is that, although the group has moved to the Multnomah Arts Center , which I’ve had posted on the site.  This meeting had to be changed back to the old stomping grounds at the Beaverton Library on 12375 Southwest 5th Street . Due to road construction and the Farmer’s Market, the time has also been changed to begin at 1:30 with Andrea coming on at 2pm.

I hope to see you there~ trust me when I say this is a fun way to spend the afternoon.

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