First, some background~

My mom is 72 years old and lives with me.  She has been battling physical challenges since before I was even a glimmer in her eye.  In fact, I suspect I am a DES baby due to the nine months of nausea I put her through while pregnant with me.  And, believe me, she works that one into the ground.

Currently, she struggles with constant pain (to name only one challenge), due to a combination, we suspect, from degenerative disc disease, fibromyalgia and nerve damage from an accident many years ago.  I think there are probably even more factors like medication side effects, nutrition (she loves her convenience foods) and lack of social support (I can’t be everything and animals don’t ‘talk’).  The point is that she knows what being on medication is about, simply because this behavior of pill popping is so deeply ingrained into her very being.

So, when she started complaining about acute stomach pain – she has chronic pain, but these new sharp pains were new for her – I began asking her questions.  Basically, our conversation today went something like this:

Mom:  Boy, my stomach is killing me.

Me:  Could it be your ulcer?

Mom:  No, this is different.  Every time I eat something, I get shooting pain.  I just don’t want to eat.  And ice cream doesn’t cool things down like it usually does. [Insert my head shake of frustration here – ulcers and dairy don’t mix for her and she knows that.]

Me:  Are you accidentally doubling up on your meds (which she does when she forgets to take one) or taking something new?

Mom: I don’t think I’m doing that. [insert another head shake by me]  I am on something new, though.

Me:  This has been going on for over a month, Mom.  Did you call your doctor like you said you would last week?

Mom:  Well, I will if it gets worse.  It has been better lately.  Just keeps coming back. [insert, ...well, you know]

Me:  Let me read the bottle, okay?

Mom hands me the bottle and I begin to read off out loud what is stated in the smallest font I’ve ever seen.  I read what it is, who the manufacturer is, the dosage and warnings.  All appears to be in order with the usual information, but I’m thinking we may want to check with our pharmacist about any prescription interactions.  Then, I get to “Take with food.”

Mom:  Oh, with food?

At the risk of sounding like a broken record, this topic is covered in the Living Well workshops offered all over Oregon and Washington.  Even though sometimes participants chuckle when I bring up how we can easily misunderstand how to take our medications, this scenario with my mom only proves how taking a minute to read one of a gazillion bottles over again just to be mindful of what we’re taking, why we’re taking it, and, most importantly, how we are to take it is crucially important.  When it comes to creative pill popping due to time constraints, lapse in memory or just not wanting to wait to eat, I’m also guilty as charged.

Mom has medications that require some with food and some without, leading her to simply want to organize her regimen that makes it more memory-friendly (not working). This re-organizing, though, causes her to easily confuse the appropriate requirements that allow each medication to do its job as designed.  We all do that, don’t we?

Mom’s appointment is this Monday and I gave her a good scolding to prep her for the one waiting for her during her appointment with her doctor.  Mine will probably be the more gentle chew out of the two, but she deserves what she will get and her situation will only support the belief among the medical community that patients aren’t taking their medications correctly. They’re right.

For the sake of all of us wanting to be taken seriously by our healthcare providers, we must be mindful every time we take our meds.  How irritating is it when we complain something doesn’t work like it is supposed to and some smart a** asks us that inevitable question “Is it plugged in?”

We all need to remember to ask ourselves that same question with the next pill we take~  no matter how experienced we our with our treatment plans, reminding ourselves to pay closer attention to our own self-care behaviors is really important.

I picked up crocheting again this winter as a means of “stress-relief meets holiday gift-giving season.”  This particular piece was a gift to my daughter, who happens to love owls right now.  I can’t take credit for the concept – as my friend Leslie, who authors the Getting Closer to Myself  blog, sent me a similar one in my holiday surprise package last December.  Her gift box, unfortunately, is still in the works…which brings me back to the last two weeks.

Here is my Wednesday with fewer words, both because I’m too overwhelmed for a full post and I’m trying my best to stick to the wordless theme.  This pic represents lots of caffeine, layers of ‘sweaters’, energy and mood swings, too much computer time and stacks of paper in the background…still waiting to be dealt with.

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.

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.

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

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

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

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

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

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

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

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

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

Eric Suarez, CPT.

www.fibromyalgia-fitness.com

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

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

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

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

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

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

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

 “Where are your shoulders right now?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Okay, I am amazed that we are already in mid-May.  Thanks to Leslie at  Getting Closer To Myself   for reminding me to get going on calls for submissions.  I will be hosting the next Patients For A Moment (or PFAM) blog carnival and, even though it snuck up on me, I am really eager to hear from all of you.  Just as a reminder, this is open to anyone living with chronic illness and not just lupus. 

I’ve been busy trying to get some of my goals and inspirations organized into actual plans.  Naturally, I’m overdoing it and I’ve been flaring again after years of what appeared to be remission…at least, as long as I kept up my meds.  I have grown used to not having lupus be a real factor in standing in my way of doing what I want, though, and the reappearance of familiar symptoms have certainly forced me to recognize the importance of pacing myself. 

I have over-committed, but I am unwilling to drop anything from my list because this taste of regaining some control in how my days will go is delicious.  I may have to negotiate a bit more, but I’m still going to aim for those goals.  

Since I dawdled at announcing this, I’m going to keep this PFAM’s theme short and sweet:

“What are your wishes and goals for the 2011 summer months that you are unwilling to let lupus (or other health challenges) stand in your way of reaching?”

Just as I am re-learning to do, I imagine there will be some negotiating you’ll have to do as well.  If you are making any modifications in your planning, be sure to talk a little about them, too.  Not only are we looking for inspiration in ideas to pursure, but it’s great to have some new tips on how to make our ideas come together with our health in mind.

To submit, e-mail me your post to maria@mylifeworkstoday.com by midnight on May 23rd  with “PFAM” in the subject line.  Be sure to also include:

• Your name as you would like it to appear
• Your blog’s name
• Your post’s title
• Your post’s URL 

Heck, if you want, I’ll even throw in some pics if you have them.  I’m hoping that what we gather up in this next PFAM might inspire everyone to have one, great summer. 

Looking forward to your submissions!