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.

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

This month in the MLWT Shelfari.com group , and continuing through March, we are discussing the book Unexpected Blessings: Stories of Hope and Healing (Penguin Group, 2009) written by Roxanne Black (now Black-Weisheit).  I received her book from her publishing rep last year, had just come across the LFA’s book recommendation list and set it aside until I had the chance to speak with her personally.  This month, we managed to speak on the phone and, I have to say, I was absolutely impressed with her. 

But, I don’t want to get ahead of myself.  Let’s talk about the book, first.  There are three main reasons why I would’ve bought this book, even if they hadn’t sent it to me. 

The first reason is that once you open the book, it invites you in with a sense of gentle honesty that isn’t here to offer you tips, recommendations, discuss medical treatments or divulge all of the unfathomable details of illness that are found in some other lupus books.  In their (other authors’) defense, there is a time and a place that we sometimes have to visit the ugliness to help us find the peace, and I would hate to not see those books available to us.  Roxanne’s book, however, is written with the intention to create a connection with the reader on some of the thoughts and experiences she has had over the years, in order to give reassurance that even the most challenging times are filled with humor, irony, possibility and encouragement.  It isn’t only for those of us with lupus, but covers life with chronic illness as a whole.  In fact, this book offers insights into the roles her caretakers, family and friends have meant to her and I recommend it to anyone who lives and loves someone facing any illness.  Some people she speaks to and of  include Christopher and Dana Reeve, a couple of champions on the perserverance and hope found within the human spirit.

The second reason is related to the first, in that this book is a very light, quick read.  It isn’t meant to be heavy or burdensome to the reader.  Instead, it reads like a moment shared that we often have with those people we trust and delivered in a style similar to those books offering the readers a ‘thought for the day’.   The chapters are glimpses into Roxanne’s thoughts, discussions, experiences and situations that she shares readily and with grace.  I could go to the book, read a chapter within minutes, get what she was pointing out and then continue with my day with a lingering notion of gratitude for being so lucky living with a mild form of lupus, hopeful that I will make some key and inspiring connections, calmed down in knowing that things will work out however they will.  This is a reference book I will keep handy for my heart, for a chance to visit a moment shared.

Lastly, the third reason I would’ve chosen this book is more personal in nature.  It wasn’t until I read the cover and followed the link to Friends’ Health Connection did I realize just how similar MLWT is to what she began years earlier.  Our project focuses on building community and stronger lupus resources here in Oregon and SW Washington, but it shares the same  premise:

that it simply takes finding one person who is going through things similar to what you are, to assure you that you don’t have to go through things alone, if you don’t want to.

 I had never heard of FHC, primarily because I didn’t reach out to others when I faced my own diagnosis.  I was the poster child of relationship-focused coping, where I circled inward and focused on parenting my two young girls, attempting to minimize the impact my lupus had on their lives.  They were an outlet for me to postpone thinking too much about my health, future and fears, offering me instead a feeling of control in something at a time when I felt I had little.  Roxanne began her network in hopes of learning and connecting with others who were going through the same things she was, which I may have done, too,  if I were a teen when my lupus arrived.  Since the late eighties, she has built an amazing ahead-of-its-time resource whose framework has been duplicated by many of the networks we now see online today.  The added feature that FHC offers, that I think is key in what makes her network truly exceptional, is how it honors the individuality of each person’s experience and connects them with someone who shares similar experiences to make a very strong resource connection.  Our PORT program does the same thing, but her network is worldwide in offering perhaps a little more personal space and many more potential points of connection.

You can read more about what others have written about Roxanne and her book, not to mention an excerpt here .  When I spoke with her on the phone, I wanted to branch out a little from what has already been written and narrow the focus onto lupus itself and the future plans she has for FHC.  I will cover that in the next post.

Check out her book through the Powell’s link here on the website or her website.  You can also catch up on the discussion (which gets more lurking than participation this round, but that’s fine) through our Shelfari Book Group link  on the sidebar as you read this post.  She has agreed to participate and answer any questions you have about her, her book or the Friends’ Health Connection, so take advantage of her generosity!

She is a wonderful person, not only in the stories she shares in her book, but also in the genuine hope that she has for anyone facing life with illness.  I strongly encourage you to get to know more about her~

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

It seemed like a good idea at the time.

I picked out a beautiful 2000 piece puzzle of Neuschwanstein Castle in Germany for my mom this year for Christmas.  It has been years since I did one and thought that it would give us something fun to do together.  The together part is working out fine, but the “fun”?  We’re still waiting for that to kick in.

As I painfully search for pieces with the exact patterns, shapes, images, etc., I hunch over a disaster that frustrates me into a punishing backache.  I have it set up on a table in our house that takes up the most part of our family room.  There is no way to walk by the thing without looking at the embarrassing lack of progress and returning to that hunched position with a dire need to redeem myself by finding “just one more piece.”  After about an hour of work and 15 minutes of trying to stand up straight, it occurred to me that this death wish of a ‘gift’ feels uncomfortably familiar.

The new year is upon us and, although I resist at the start, I usually end up with at least a few ‘resolutions’ or goals that I put out into the Universe hoping I make my way to them within the next 365 or less days.  “Hoping” is the operative word there.  Every year, I tend to look at the entire year all at once, in all of its possibilities.  And, every year, I find myself overwhelmed with all of the work involved.  Unlike the puzzle, I shudder recognizing all the pieces of my life floating around looking for a place to belong.  I lose steam quickly and create some pretty amazing excuses, distractions and impressive cases of sudden amnesia—all in an effort to completely avoid getting anywhere in my big picture.

The thing is, my life is consumed by these unmet goals or resolutions just like that table is fully present in my family room. I can’t get through a day without noticing how little progress I’m getting to something that really could be beautiful, too.

Now, this doesn’t mean that I don’t accomplish things, because I certainly do.  What I’m not happy with is that they aren’t the ones my heart is aiming for and are often downsized for various reasons.  For the last two years, I’ve come up with some general goals allowing myself to ease up on some of the pressure in completing them.  That hasn’t been working out.  I’ve noticed lately several people talking about choosing only one word to focus on for your year, giving yourself something to look for in every day whether it be peace, joy, laughter, gratitude, and so forth.  The only work would be to find something in every day that reflects the word you choose.

I don’t trust myself in doing that.  I have been generally stating goals such as “better health” or “get in shape” thinking that they cover the bases. In reality, they leave me off the hook and unmotivated.

Perhaps I just need to focus on a visual reminder to get me through this year.  Puzzle.                                                                 (image: Buffalo Games)

This year, I chose only five goals that I want to see myself accomplish and complete.  I am viewing each goal as if it were a part of a big puzzle.  With Neuschwanstein, I am breaking the whole thing down by working on the sections of the picture: castle, lake, and branches.  With my goals, I’m using the same process and one that is recommended whenever we put together our action plans to address personal goals.  By having objectives that are specific and measurable, I’ll have direction, more focus and know when I’ve completed the tasks.  That will eventually make up the goal, because each image will become clear with every piece I place.  One of my five goals is still about improving my health, but I think I’ve come up with a more targeted action plan and already see positive progress.  Eureka!

One objective I’m using to measure my progress this year to “Build More Health Opportunities” (both for this project and myself) is choosing resources that get me to be more physically active and outdoors.  My current gym membership—you know, the one I made a big deal about starting last year?—expires in March and I’m not going to admit to you how many times I actually ended up going.  Let’s just say they were pretty darned expensive workouts.  The good news is that I do better with actual deadlines imposed on me by others AND I’ve found a way to integrate the gym experience more into my daily life.  That’s a whole ‘nother post, though.

This past week, I went to my first PDX Meetup.com group called Portland Women’s Outdoor Club .  The registration for this group grew so quickly and, I suspect, will continue to do so, as many of us celebrate in the realization that we can find others at similar physical and skill levels to motivate us to get out there.  There is a great mix of skill levels, interests and ages among the women who attended the first meeting.  I was happy to hear that the activities that I want to take part in more often and learn for the first time were shared by the majority of gals there.  Beginning mountain climbing/repelling, hiking, backpacking, and snowshoeing (although I really need to work on my stamina for that one!).  It was easy to find someone who had a lot of experience in this group in these particular activities who could lead the rest of us newbies.  There are also some pretty creative gals in coming up with some other options when the Oregon winter just isn’t something we feel like experiencing.  I haven’t gone to one of the activities yet, but my curiosity is peaked about this Wednesday’s gathering to learn how to make a coke can alcohol stove (for those ultralight backpackers  in all of us.)

 I will go ahead and cross this objective off, because I’ve signed up with an opportunity and met some of these gals—my biggest hurdles.  I am really excited and encourage any of you locally to check this group out.  The more people, the more options, more opportunities and all the more likely I will take part.

I hope to see you, too!

We have extraordinary resources these days via the internet to seek out more and more information, offering us countless opportunities to live well in the face of chronic illness.  All of these opportunities are based on the value of dialogue – whether with your doctor, loved ones, employers or those you ‘meet’ on the social networks and websites. 

Today, I want to introduce an opportunity to join in on another great dialogue.  

Every month, we will be facilitating discussions centered around books that explore many sides to living including illness, but not limited to it.  This month, we are talking about the book  Despite Lupus:  How To Live Well With A Chronic Illness.  As a special treat, the author, Sara Gorman, has graciously offered to join in and talk right along with us!  Her book (and her perspective) is more of a conversation about ideas than a self-help manual.  Her approach reflects the MLWT’s mission in recognizing the abundance of our own, personal knowledge of illness and creating the chance for a dialogue to strengthen it.  Offering a conversation is probably the best way to support a person in the throes of their adjusting to physical and emotional change.  

We won’t just be discussing lupus during November—we’ll be discussing our lives in general, that just happen to also involve living with illness.  If you ‘know’ what illness is about, please join in on the conversation.  If you are new to living with a chronic illness, join in on the conversation.  If you don’t think you need any support because you are doing okay with your lupus, join in on the conversation.  These book groups aren’t going to be just about reading the books—they are a chance to take part in this social connection that is more similar to sharing a cup of coffee and enjoying a conversation than attending a support group.  For some people, support groups just aren’t what they are looking for and bulletin boards can sometimes get too overwhelming.  These book discussions offer you opportunities to have something in common to share rather than just lupus, but if the subject of illness creeps in, no one has to explain themselves. 

Here is Sara’s opening for the discussion.  If you prefer to take part here on the blog rather than sign up for the other networks, simply comment on this post with your thoughts and I will transfer them over to the Shelfari.com discussion.  The month-long discussion can be viewed by clicking on her book’s image shown in the right sidebar on our website’s main page. The other networks where this discussion is being hosted are listed on the side bar once you open one of our posts.  We are also hosting it at WeAreLupus.org under the “MLWT Target Practice” community. 

Join in on this opportunity to explore what we already know and celebrate with others who are doing the same.

Author Sara Gorman:

“Hello and thanks for joining the discussion! I’m thrilled to be participating in the virtual book discussion of my book, “Despite Lupus”, and look forward to answering any questions you might have about the book. Feel free to ask about the content, the cover, the publishing process, or any aspect of my personal experience with lupus – I’m happy to share.  The book is available on my website – which is www.despitelupus.com, at MLWT’s blog, at several bookstores across the country, and on Amazon.com. I update the blog on my website several times a week, so feel free to stop by if you’re searching for more “Despite Lupus” talk. I just recently posted a ton of reader feedback on the site (found under the menu category “Reviews and Reader Feedback”), so you can see what others are saying about the book before chiming in. 

Since the book came out in May (on Amazon.com since June), I’ve been hitting the book touring circuit pretty hard. Each book signing has been better than the last, and it’s been wonderful meeting and connecting with so many people across the country, most of whom have lupus just like me. I’ve had to be mindful of how many events I take on, of course. Even though I’m living well, I still have to find time to rest up and not overexert myself. Lupus is still very much a part of my daily life, but now that I have the disease under control (thanks to the steps I’ve taken to live better – all of which are outlined in the book), I feel like I’m the one calling the shots, not the disease. What a relief! 

Having just returned from a book signing event this past weekend (the Lupus Walk in Richmond, VA. Go Richmond!!!), I’m primed and ready for your questions and anxiously await your comments. In the meantime, I’ll leave you with a question that came up several times throughout the event. Here you go and thanks!

Q: What advice would you give to someone who’s been diagnosed with lupus?

A: Oh man! Where should I start? Off the cuff, I’d pass on a couple pieces of advice that I learned in my lupus support group years ago, when I was newly diagnosed: 

1) Allow yourself to work through those initials feelings of sadness, anger and frustration. Grieving for yourself and the life you used to have before lupus is a very natural (and I think healthy) process, something that the more seasoned members of my support group encouraged me to do. 

2) Once you’ve allowed yourself to do this, realize that while lupus is a chronic, life altering, unexpected (and unwelcomed) change in your life, you can still live well, despite it. You have to step back and say, “Okay, I’ve got lupus. Now what can I do to improve my life with this disease?” Every day that you consciously decide to help your cause (take your meds as prescribed, reduce your stress, rest an extra hour or two, pass up on an outing that you know will push you beyond your limits), you’ll be one step closer to living well.

It takes courage, patience and self-awareness, but you can do it. Life with lupus can improve – that’s the best news out there! ”

The new awareness campaign, “Could I Have Lupus?”  offers a great chance to introduce the disease and, in particular, those individuals of color who are affected at higher rates with treatment discrepancies.  However, it still presents lupus in a limited fashion.  There are no men. There are no teens.  There are no employers speaking of the high costs of having employees with lupus.  They don’t offer physicians speaking about their frustrations in not having time, medication or answers for their patients.  They don’t discuss the financial choices – to work, to go on disability, to choose between meds and food.  The campaign is something and I know I’m grateful to them for their effort, but there is so much more that needs to be said.  No campaign of any sort will completely cover something as individualistic as lupus, which is why we need to add our personalities to the dialogue.  The aim of this invitation is to focus on the key to any awareness effort - to make your ’cause’ mean something to those around you.  Hopefully, through your words and within all the various pieces you contribute,  someone out there – whether they are ill or not – will find something relevant to their own life.  That is our ultimate goal.

This month, we are calling for guest bloggers to bring to all of us their own perspective on  ”What lupus means to me…”  that will be posted during the entire month of May.

We are keeping the theme as general as possible in order to invite those details that we all feel are uniquely our own – be it our independence, our ability to cope just fine, our isolation, our difficult choices, and so on.  Whether you have it yourself, live or work with someone who has it, or even have patients and clients with it.  Your contributions can be anonymous if you feel better in doing so, however, we ask that your piece honor the intent of this event by writing it:

To provide readers insight into what having lupus is like for you that will accurately and respectfully educate or inform the general public

To offer suggestions, tips and tools to patients and caregivers that will assist them in living well with lupus

To encourage those with lupus to see themselves as a part of a community that is as dynamic and individual as lupus is itself

To promote the efforts of individuals, organizations, associations and foundations toward strengthening the goal in developing treatment options and positive support to those living with lupus

Due to space, we ask that your submissions be

to us by April 25th

no more than 650 words, and

in a Word document attachment to the email address mylifeworkstoday@gmail.com. (Please put “May Lupus 2009“ in the subject line)

If you don’t blog or use the internet, or have difficulty writing due to pain, you are invited to mail your pieces in to our address listed on the blog’s contact page and it will get put together for you. (It will be posted only after you have the final review).  If you have any questions or concerns, either comment here or email me directly.  This event announcement is also explained on our bulletin boards in the Welcome to MLWT – Announcements forum.

We are hoping that those of you here in the Pacific NW (or know someone with lupus living here), will join in.  We recognize that May is also National Fibromyalgia Month and that both of these illnesses go hand-in-hand.  Therefore, our blog is open to anyone living with illnesses that include lupus-like symptoms and who may be facing a diagnosis for it as well.  We know how difficult getting clarity in our health can be and receiving a diagnosis for autoimmune illnesses can sometimes be emotionally brutal.  Yet, we still move forward and that is the celebration we want to express here during May’s awareness efforts.

The rest of the country has a much stronger voice out there leaving us here locally to go along without contributing our own take on things.  I, personally, can speak for myself… how about you ?

We look forward to hearing all that you would like to say~

As the new season approaches, we are looking at planning our gardens, the return of more color and sunshine to the gray,Pacific Northwest winter and lots of renewal-themed events.  So, too, is this season arriving here at MLWT.

As of today, our site might be going through some weird downtimes and redesigning processes, so please be patient.  The last post will be re-posted because it is receiving both comments, twitters and emails showing the topic of our futures is one that we all want to explore.  Our bulletin boards have been closed to new registration and undergoing some evaluations.  I want to apologize to those who have contributed to the boards recently that went unnoticed by me – I’m back.  Although the registrations will remained closed, I can re-open them upon request (via email) and those already registered can still participate.  I hope you will consider joining in -

Therefore, expect to find some new direction with what MLWT will be working towards, but know that the MLWT mission is still true:

  “… to inspire individuals who are living with all forms of lupus and lupus-related illnesses by being a strong resource of opportunities reflecting the potential and well-being of our Oregon and SW Washington communities.”  We are also very dedicated to learning from those outside of the PNW – there are some amazing people out there and we encourage you to visit them as well.

Looking forward to exploring this new year with all of you~ be well!

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I will be attending the local Scleroderma Chapter’s 8th Annual Cheri Woo Scleroderma Educational Seminar this Saturday and hope that you’ll join us.  Registration is available online (you may still be able to take part in the free lunch is you register today) and probably at the door as well.  Follow the link for more information about the speaker, the times and location.  Even though you do not have Scleroderma, it is also an autoimmune illness and the tips, skills and information about self-care can still apply.  Plus, you will meet some wonderful new people.  I’ll be there with the usual red apple – if you see me, please say hello!

How can we take on something as rigorous as college when there are days when we can’t even sit without pain or think due to the extreme fatigue that comes and goes?

If I can’t hold a regular 9-5 job, is college going to offer me more opportunity or send me straight into a mother of all flares?

Will I fit in or have any support if I am struggling – or will I be shunned because I look well, but act like I want constant sympathy?

Today, I enjoyed a phone conversation with Betsy Pacheco, who is the Coordinator for the Disability Resource Center and Tutoring Program at Clackamas Community College .  She graciously provided answers to some of these questions regarding college educational support opportunities for those facing autoimmune diseases. 

According to their website, The Disability Resource Center offers “...support [for] student success by creating full access and providing appropriate accommodation for all students with disabilities who have the ability to benefit from the college experience. “ 

The definition of “disability’ applies to any situation that is covered under the Americans With Disabilities Act or ADA.  Established in 1990 to “…provide protection from discrimination for individuals on the basis of disability.” (Source:  CCC Disability Resource Center website), lupus falls under the protection in general due to some of the symptoms that are exhibited.  However, since the ADA does not provide a list of diseases that are covered, that also means that there is some flexibility in interpretation and can potentially cause some problems when needing extra consideration in settings such as education or employment.

When facing extra challenges and uncertainty about whether employment or school are options for us, this vague ‘interpretation’ guideline can sometimes lead us to not even try to pursue our interests or jobs.

At CCC, the Disabilities Resource Center (DRC) will offer you student-focused advocacy in determining your physical classroom needs.  In discussing your situation with the Center’s staff, together you can create some ideas for accommodations that can then be addressed to your professors (by you) utilizing their expert assistance.  Such options may include flexibility in class arrival times, occasional opportunities to stand up and stretch, a different chair to sit in or other means necessary to accommodate your learning that can be implemented within the classroom. They also provide some classes in managing life as a student facing additional challenges and by giving you some helpful tools for life outside the classroom.

Their services are not limited to only those students who enroll in their program.  If considering yourself as “disabled” is uncomfortable for you, you are still able to meet with them and discuss any challenges you are facing that might be threatening your continuation.  She estimates that the majority of students participating in the Resource Center’s services do not have specific physical challenges.  She also understands how chronic illnesses, such as lupus, often present barriers even though the causes might be ‘invisible’ and fluctuate in severity.  In fact, she has been able to assist some students living with illnesses like arthritis and fibromyalgia in continuing on to successfully complete their degrees.

The DRC offers coaching in ways you can speak with your professors about why you’re are struggling- without disclosing personal information about your illness (something you are not legally bound to do).  If, for some reason, your professors do need some additional encouragement in meeting you part way, the resource center will offer them a formal accommodation letter explaining the ADA requirements and present your requests for consideration that you determine would be helpful in getting through your classes.

The Center’s goal is to advocate for you by focusing on your rights to accommodations in partnership with your instructors.  They are not able to alter the core essentials in your educational program nor do they offer mediation per se.  They do provide resources, support and encouragement for you to take charge of your own educational destiny. 

Ms. Pacheco stated that in the 10 years she has been working within community colleges (two of those years at CCC), it has rarely come to the point where a professor refused some type of accommodation and feels privileged to be working within such a supportive environment for their students.  If you would like more information or need further advocacy for your situation beyond what your school’s disability program can offer, she encourages every student living with illness or physical restrictions to visit or contact the Office For Civil Rights.

Our thanks to Ms. Pacheco for offering us some insight and encouragement to consider higher education and for her service to all the students who have benefited from her kind advocacy in helping us move beyond our health challenges.

If you’re at all wondering whether school is possible for you – and we hope our country’s new administration will value education – then give them a call at DRC or check out the student services programs at any other schools.

In today’s climate, we need all of the options we can get.

Please take a moment to consider your own humanity and learn something new about a place, a person, an issue or an organization that speaks on behalf of someone in need.   It is so easy to notice the differences between us as we declare daily our ‘individuality’ and uniqueness.  However, today we need to reflect on those elements that we all share in common ~ the basic human needs including love and care, safety and peace, food and water.  We all need to know that we matter here and that we offer something that can be valuable to others.

Step away from the hectic pace of the shopping season, learn more about “needs-based” thinking and get involved with local community efforts . As a primer to recognizing what is going on behind the words of the person you don’t agree with, the belief and value systems you don’t share or the social unrest and violence you see, here is a link to a non-violent communication approach (workshops available locally) that might help you gain some middle ground. 

As we with chronic illness struggle to learn what it means to ourselves, it is important to recognize that others are doing the same thing.  Despite our illness, the needs between us are still the same and by finding a way to work out the challenges and focusing on the things we share will help us get through (and over) the hurdles we see as barriers.  This might be especially helpful to us for the holidays.

Today, understand that what is truly important in this world can be found in the hearts of every one of us ~ and we all, as fellow humans,  have a right to having those parts of us honored by all~

In following up on the last post about Network Remodeling (Sorry, we have a weak connection… ), it is important that we recognize the roles our relationships play in how we manage our health and – basically – our lives.  Focusing only on the medical information, research, nutrition, medications and treatment options often overlooks a key element in our daily lives:  we are social creatures.  To not take into consideration the effects that relationships have on our well-being is one of the downfalls of health research, because we do not live in isolated test tubes.  Nor is our physical self that far detached from our social/emotional self.  Those of us with overactive immune systems need to remember that.  

For now, I’m not talking about seeking support from others to help in coping.  What I am talking about is how our relationships can either nurture or interfere with our efforts to individually manage our health challenges as we get through our holidays.

Again, network remodeling is a term coined by social support researchers (Renee F. Lyons, et al., 1995) to recognize the relationship-focused coping strategies used by individuals living with chronic illness.  This particular strategy targets the creation or changes of their social network web in order for it to be more supportive or productive.

Remodeling will sometimes occur automatically due to the challenges illness(es) create in relationships, such as the loss of energy to socialize or the discomfort people around us feel from not knowing what to say or do to ‘fix things’. 

In the last post, the suggestion was to write out a list of people you anticipate in having to spend time with this holiday season.  The goal is to identify the supportive (nice), significant relationships in your life to invest what energy you do have towards nurturing them as you would yourselves.  For those that are less supportive (naughty or difficult), it’s time to take a look at them BEFORE you have to spend your holidays stressing out about them.

When we find ourselves isolated or limited in our resources to socialize, many of us turn to the internet and/or social networking sites.  It is ridiculously easy to build a ‘social network’ with strangers without ever having to put ourselves into the commitment that friendships, in reality, do require.  We “friend ” people we will never have to meet face-to-face.  We “follow ” people we would never agree to doing literally in person.  The language used in these sites give us a false sense of connection, just as having a lot of people in our networks does not mean they are our friends who would be there for us, if needed.

Creating and evaluating a virtual social network is as easy as a click, with little possibility for trouble.  Losing a virtual friend will more than likely not affect your ‘real’ friends.  However, creating and remodeling an in-person network can really hurt.  Not just in dealing with emotions/situations like shyness, awkward moments, heartache, guilt, anger and resentment, but it will also hurt you physically with the stress you experience in going through building or eliminating- it will engage your immune system either way. 

Remodeling isn’t, by the way, just hacking up the list of people you know you aren’t seeing eye-to-eye with.  It’s to shape and sculpt – regularly -  the list of resources and opportunities you have to share your life and energy with that will support you in thriving.

If you have already written the list of people, the next step is to begin the remodeling process for this holiday season only.  This isn’t for the long term – these are the holidays and let’s just get through the month for now, shall we?  If you did put the names in columns (I used “nice” and “difficult” columns), take a look at where the weight lies – meaning, which list is bigger?  The ‘nice‘ column is now your holiday season network.  That’s it.  That is where the majority of your energy will be spent nurturing those people who feed your support needs – perhaps with real food, too.

Now, for those in your ‘difficult‘ column – these are the ones you will now consider for placement in your social calendar. There are two rules: 

• Rule #1: They don’t all get in.
• Rule #2: You have to contact those who don’t get in and honestly say that it’s going to be too much to see them during the holidays and wish them a great 2009. Cards are fine.

Remember, ‘difficult’ means just that – not impossible.  There is actually positive stuff that can come out of a rough connection~ namely, just as it is with an electrical circuit, we learn a lot about ourselves in both the ‘positive’ and the ‘negative’.

Once you get through the list of people one by one, note on the side of the name either a “Y“ or “N“ which answers one or all of these questions:

1.  Can I give this person 5-15-30-60 minutes of my life if I promise myself that is all I have to give them?

2.  Can I be around this person without harming the relationships with someone in my ‘nice’ column?

3.  Would time with this person potentially help someone in my “nice” column – as a gift to them?

4.  Can I allow a time-out from my hurt feelings, as a gift to myself, so that I may enjoy being with others this holiday season?

Hopefully, you won’t have too many people to go through and pick no more than half of the people from this list, because you really don’t need to stress yourself into a short circuit or flare.  What you do need to do is ‘decorate’ your network for the holidays with a working string of lights and enjoy the view.  The New Year will be here soon enough to take apart your tree and begin anew.