One friend, in particular, would take what seemed to be forever to get back to my emails or phone calls, which would frustrate me since her lupus was of the more aggressive type.  When she did get back to me, she would tell me of stories regarding emergency hospitalizations and troubles during dialysis.  I would chastise her for not letting me know that things had been so difficult and she would assure me that when things were really bad, she would call.

Usually, the majority of the catching up between us would be more about the new love in her life, her new projects through her church and the friends she was making at various health-related appointments.  It was always good to hear this stuff, because I could always see her face lighting up and her gentle smile as she told it to me in person.  On the phone, her voice reflected that same gentleness and I hung onto every chuckle from her.  I wanted so much for her to be happy, as I watched the lupus ravage her for years.

My absence from here over the last few months was in direct result at the shock I experienced when her mother called me in early July to say that Darese had passed away in June.  My reaction was mixed at the news and the months that followed had me in a funk that varied between absolute sadness for her, anger towards her for not letting me know what was going on, guilt for being angry with her, regret for not being there for her and so on.  Then, the wake up call forcing me to remember that lupus isn’t something to take lightly, which shut me down altogether.

I could not bring myself to write about her passing until now.  I think I’ve found some balance and I know that she would be scolding me, if she were here, for being such a baby for this long.  There was so much about her that I hold dear to my heart and it is about time I share it.

I met her when I finally decided to check out a lupus support group, about a year after my diagnosis.  She sat there, the only African American gal and under the age of 45 years.  The facilitator was younger, but busy talking with everyone there.  So, I took the seat next to Darese, intent on keeping to myself as I forced my way through the meeting.  We used to laugh later  about how she had planned to do the same, but neither of us could help connecting to each other.  We were peas in a pod.

The stories she shared with me during our decade-long friendship were sincere and inspiring.  The jokes, complaints, her rantings and “some day” dreams made her so unbelievably human.  The miscommunications and misunderstandings between us made our friendship worth fighting for.  Even though there was often too much silence in the last two years between us, as life’s chaos took hold of our days, we always knew each other was out there.  At least I can say for certain that her being on this planet with me — somewhere — meant everything to me.  I want to believe that she perhaps protected me towards the end.  She probably knew I wouldn’t be able to watch her go.  She was right, as usual.

Sharing this with you brings back all the sadness I have suppressed since that phone call and I see that I still need time to accept that she’s gone.  There are people we come across in our paths here who connect with us to the core.  We may know it emotionally, physically, spiritually or mentally.  Sometimes, we can’t choose the people who connect with us that deeply and their presence may serve as more of a reminder of who we need to become, rather than a celebration of who we are already.

Darese and I didn’t choose each other, but I choose to keep her close now, even though she has passed on ahead of me.   We celebrated, inspired, challenged and were very grateful to be there for each other.  Her place in my heart now reminds me to not let time go by too long before checking in on the other special people in my life.

Silence isn’t always golden and the sound of it can be deafening for our hearts, if we’re not careful to keep them connected.

Just a quick note~ 

Today begins our April MLWT book group discussion on Shelfari.com   and we are featuring Carla Ulbrich’s  How Can You NOT Laugh At A Time Like This? .  In fact, Carla has joined in on Shelfari and will take part in the discussion as well! 

I missed out today, but I’ll be starting things up tomorrow with some reading and a few notes to get things going.  If you haven’t read it, or don’t have it yet, remember that these discussion are on-going and you can join in at any time.

Hope to see you all there~ I suspect there will be some chuckles to be shared.

Check out Love Simple

Last month, I went on a hike through Tryon State Park with my new friend, MLWT Guest Blogger and Acupuncturist, Becca Seitz .  Despite my constant and intense headaches weeks prior, I felt the need to get outside and move.  Preferably with someone to talk to and in beautiful surroundings, which Becca and Tryon Creek provided effortlessly.  During our walk, I was telling her about my headaches and being buried under a great deal of stress.  I had several theories for my throbbing temples ranging from lupus (of course) to changing barometric pressure.  She shared with me some philosophy, which I plan on hitting her up for in a future blog post, that struck a chord in me and I’ve been mulling it over daily since our walk. 

She explained that this philosophy (I believe it is within Chinese medicine) describes a symbiotic relationship between us and trees that involves an exchange of stress.  We often hear how detrimental stress is to our health and wellbeing, causing all sorts of problems within our own bodies and spreading to other peoples’  ‘bodies’ we share our days with.  What we don’t always consider is the wood element in Chinese medicine, also present in Western pharmaceuticals.  Trees have been a part of treating illness for centuries when it comes to medicine, but there is more to that relationship than just the ingredients of the bark we absorb.  The trees are believed to absorb from us, too.  Becca brought up how stressful conditions actually make trees stronger and, if you garden at all, you know to not to tie up your new tree seedlings too tightly to their pole.  The movement from the wind and other forces actually strengthen the trunk during its development .  As we walked along the path through the trees, we spoke of this wonderful idea about unloading the stress we have within us during our walk to make us healthier and that, in turn, we could actually be benefitting the trees around us by making them stronger. 

I’ve been pretty frustrated with the weather here this Spring, as I suspect many of you have been, too.  I thought that it could be because I’m back to sitting in front of the computer for longer periods of time working on several big projects.  Maybe it is because of the gray skies leading to my darker moods, aches and poor sleep.

It could be that I just miss time with my friends and trees, my fellow stress magnets. 

This weekend promises some heat and sunshine, and not a moment too soon. My oldest daughter is graduating from high school and she will be the first to be leaving the nest, so there has been some stress building up within me over that, too.   I know I will be hitting a trail as soon as possible to relieve some pressure and make something good with it, or I will undoubtedly explode. 

Today, I came across a link that leads the reader through a meditation linking trees with de-stressing .  I did it and, surprisingly for me (I don’t like meditating), I actually felt great afterwards. I’d put it here, but haven’t yet figured out whether I need to gain some permissions in writing first.  There’s something else to stress about!  The gist of it is just to stretch, breathe deeply and move gently as if responding to wind.  You can take it from there, but it isn’t anything new.  Just be sure to recognize your own limitations and don’t push yourself too hard.

Wishing all of you a more gentle breeze today and a wonderful weekend~

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!

As the year moves into spring of 2009 and I consider the fleeting moments of time, I think about my friend living with Lupus and how much I appreciate her moments of health when we can laugh in the moment and be grateful for the breeze and the birds chirping.

Will it be many months until I see her again? 

Or will these moments be allowed to continue in succession, tumbling into the vast pool of held memories; that will eventually weave a narrative. 

There is a part of me that needs an accumulation over time of these moments to create the story, the tale, and is always hungering for more material.

But the moments in time that provide the life’s blood of the tale can be precious in the present and then lengthy between events.

This in fact must be part of the narrative, and is my focus of consideration, as I view Lupus as an entity, as I ponder its meaning, and notice its influence on the gathering of the small details of life that make a friendship.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Doug Franklin is an MLWT Advisory Team member and a good friend who has known his own health challenges over the years.  Although he does not have lupus himself, he is a local professional working with individuals living with many types of disability throughout Oregon and graciously offers his expertise in developing this project.  Always a wonderful source for information, service resources and inspiration, we are truly grateful for his support.

#7  Personal Secret:  I resent others for my not having any personal space

When I started digging into my muck, I first checked to see how ‘secret’ is defined, in general.  The definition that I felt fit this particular secret was #4:

“designed to elude observation or detection“ 

Living with an autoimmune illness, we know that carrying around stress and stirring up our immune system is the worst thing we can do to ourselves.  Creating and harboring stress while having lupus is nothing short of pouring gasoline on a fire, emotionally and physically.  What might elude most of us, however, is the fact that the most caustic forms of stress are those that lie underneath our surface, chronic if you will, rather than the big blow-up types.  In order to find what lies beneath, it takes some active searching and that isn’t usually on our daily to-do lists – probably because it’s a lot of work. 

The feelings associated with my lack of personal space have been very apparent to me (and my family) for quite some time.  The amount of resentment I’m harboring, however, caught me off guard until our recent winter storms.  Cabin fever aside, let’s just say I welcome the gloomy rain.  Historically, I had little choice in giving up my home about 7 years ago – life got ugly (my parents split) and people didn’t like to see me as a single mom with lupus going it alone.  I knew that sharing my life beyond my girls was important and necessary.  I also knew, though, that I could be pretty independent and enjoyed doing my own thing.

There is a great deal of research on multigenerational living (my mom lives with me now), on the suffocation dance many couples face in their relationships from time to time (I’m not married – once is enough), on supportive parenting tips, on work-related warfare and so forth.  For the most part, I already know what works in keeping things fairly smooth for all three adults, primarily two (but technically five) daughters, one visiting grandson, one blind and manipulative Aussie Shepherd and two spoiled cats in our 2000 sq. ft. home.  In a nutshell, managing the physical space helps a great deal with preserving the emotional space of my co-habitants and I do it using creative organization, a tri-level home, well-designed landscaping and food.

Physical space definitely equals emotional freedom for me and feeling free is one thing I rarely notice in having lupus.  When I was first ill and going through a tough divorce, I relished being able to cook whatever I wanted, play my music and play it loud, goof around with my young girls and not always feeling like I had to be such a grown-up. Even though there was a great deal of stress during that time of waiting for many answers, I felt more free than ever because I had my own place again. I started up chemo and would come home not having to be taken care of or be looked at with pity because I was alone.  I probably could have used some help, but felt an immense sense of accomplishment by doing it all alone ( I credit that to getting me where I am now in managing well).  In fact, when I was hospitalized for declining kidney function before the chemo, I didn’t tell anyone because I didn’t want visitors -just my personal space to deal with what was happening – alone and free to handle things on my own terms.

This process of stepping away from painful or stressful events is a coping technique I have used a lot and may have become a little carried away with called “self-distancing“ (I recently ran across it on Blogher then realized the referenced article was in the Oct 2008 issue of Oprah found in my ‘to-get-to pile of readings’). It is basically a tool to help reduce our stress responses to an event by offering, what Ethan Koss, PhD at the University of Michigan, describes as a “psychological time-out”. (Oprah Magazine, pg. 194)  This is a great coping strategy for anyone newly diagnosed to consider putting into their Lupus tool box.  Ideally, it’s stepping outside a situation to see the forest from the trees and gives you some emotional space before having to jump into action. 

My problem in 2008 was that I stepped outside myself to avoid stressors from expectations and lupus, but got lost.  I ended up neglecting to contribute some other parts of myself back in both physically and emotionally.  The catch with using this coping strategy is that it is an effective tool only in the short term – take too long and we find ourselves cemented into non-action or, worse, denial.  Just as denying our illness initially upon diagnosis can sometimes help us in adjusting to the changes…waiting too long to seek treatment options and management could be deadly.  In an effort to minimize my stress levels about lupus, I have now hampered any stress-free benefits by distancing myself beyond it.  As I keep thinking that I am coping with stress, I’m simply just piling it all under the surface.  What makes this realization frustrating is that I am purposely thinking myself into more illness – not just neglecting my self care. 

In my efforts to convince my family I’m fine, I deny my place here and not just with lupus.  I don’t mean thinking about having it day in and day out – I mean staying in touch with how I can make my life work well by paying less attention to thinking and more towards doing.  These days, I adjust the style or volume of music to meet my elderly mother’s mood, cook meals that everyone will eat, feel forced into living with knick knacks and other items that don’t reflect who I am, and basically have to monitor the things I say or do - as I seem to be made of a very different cloth than the other adults I live with.  You might say “No, you don’t have to do that”, but this is where it gets messy.

I am one of the many individuals living with lupus who are generally more relationship-focused in their coping with illness.  I do whatever I can to minimize the impact my health has on relationships with my family and tend to overcompensate by putting their needs before my own way too often- just to prove I am still capable of contributing.  Yet, the more I try to cover my lupus, the more I cover myself up leading to more resentment.  I am battling daily that fine line between fusing who I am and the roles I play in my relationships.  Perhaps due to the bond, sharing my physical space with my daughters has never been an issue, but I have so little patience with the others – even the pets, because my mom spoils them so.  

I’m not saying that my health is solely based on my thinking – what I am saying is that my thinking in 2008 directly affected my behavior that made my health/life less than what it could have been.

I’ve run into several bloggers who are admitting that when they feel better, they get lazy on taking their meds or scheduling their appointments.  I do this, too, and it is this same style of coping – distancing ourselves from having to admit that meds are important or that the lab work won’t turn out the way we want- that can cause us much more harm than paying attention to where we stand. 

The resentment that has been building up within me, then, has less to do with me being required to share every square inch of space with no room to call my own.  It is more about the “space” within my head, body and soul. I know the people I live with aren’t really to blame for me not feeling at home.  I just don’t feel like I really belong here, because I’ve purposely stayed away too long.  

This year needs to include defining some personal space (both within my home and within my life with lupus) that I can feel free to enjoy. I want to get back to acknowledging things about me that I can be more open and joyful in sharing with people – not just doing for them.  To be honest, I think my roomies would be happier about that, too.  

The pets, though, could care less …and that’s fine by me.

Relationship-focused coping source:  Relationships in Chronic Illness and Disability, Renee F. Lyons, et al. (Sage Publications, 1995)

On the outside, there are things about me that you see.  However, there is much more to me underneath it all.  These are some things you need to see as well.

Underneath

 my skin, there is-

…an immune system working too hard to defend it’s ’self’

…a sick person working too hard to defend her ’self’

my flare, there is-

…an inflamed body that is in distress

…an inflamed sense of purpose that is in distress

my anger, there is-

…adrenalin, hormones and pain fueling my rage

…fear, worry  and loss of control fueling my rage

my swollen legs and hands, there are-

…a build-up of fluid that I have to carry

…a build-up of emotions that I have to carry

my rashes and lesions, there are-

…too many killer cells sending out an SOS

…too many reasons I should be sending out an SOS

Underneath my words, sobs, multi-tasking, offers to help you, and unexplained seclusion, there is-

…a body that doesn’t recognize what is ’self’ and what is ‘foreign’

…a woman who doesn’t recognize her ’self’ and who ’she’ is now.
Please offer me one more minute of your time and take another look…

My Lupus is…

L is for “let me…”

• Let me be angry, sad, tired, lazy, alone, independent, courageous, free, supported.
• Let me be the one to decide, the one to talk, the one to choose, the one to sleep.
• Let me eat what I want, when I want.
• Let me hurt, tell you I hurt, own the hurt ~ and not have to justify it.
• Let me know when you’re frustrated – let me tell you when I am.
• Let me be invited if there is a social event coming up, then let me be the one to decide if I’m up for it or not.
• Let me work or do when I am feeling strong ~ I need to.
• Let me talk about things when they build up without worrying about your feelings first – I promise to let you have those moments, too.
• Let me not be the one to hold you back and let me show you I can be someone you respect.
• Let me try, fail, try, fail, and try again…I need to.

 Let me share with you who I am as I grow with lupus.  Let me hear you laugh, cry, remember and love the person I used to be…                    

…and please let me believe that I can still be that person for you today.

Me:  “How are things?”

Sara: “Oh, things are okay, I guess.  The kids are driving me crazy and I am more than ready for them to be back in school.  They just wear me out – and it doesn’t take much anymore.  We really aren’t doing anything fun or going anywhere this summer mainly because we’re stressing about money.  We stay in the house most of the time because, even with sunscreen, we’re burning so easily. “

Sara lets go a deep, resigning sigh and continues:

“[Jon] is working his tail off and I’m still putting in my 30-35 hours a week, but I’ve come down with two colds or sinus infections that lasted for at least two weeks each.  My boss had the nerve to pull me aside after the second time I called in sick.  He couldn’t understand why I was getting sick with colds in the summer – “that’s a winter problem”, he said.  He went on about how [another girl in her office] still comes in even when she is having a hard time with allergies – [she mimics him] “which is basically the same thing as a cold“.  Then he had the gall to say to me sarcastically: ”Maybe you’re not happy with working here.“  “ (I won’t put in what she called her boss here, but you can imagine)

Me:  “What did you tell him?”

Sara:  “Why bother?  If he isn’t sick, he could care less…forget about getting any compassion.  I’ve called in two more times including today – I’m at the mechanics, today, okay?  Last Thursday, I told him I couldn’t get anyone to watch the kids.  Pretty lame excuses, but I don’t care if he sees through it – I just am too tired to care.”

Me:  “How are you doing now?”

Sara:  “I don’t know what is going on with me lately.  I can barely make it through the day because I am dead tired.  I ache all over and sometimes don’t even want to move.  I’ll start out the day with a killer headache and by evening my feet are swollen, my fingers are numb or my joints ache worse.  I had a tough time with the sinus infection – my mouth was raw with sores and my ribs hurt something fierce. It just keeps coming…a few days ago I found a weird sore on my arm that isn’t going away, I’m obviously forgetting to drink because I never pee anymore and I have absolutely no appetite.  Well, that’s okay ’cause I’m losing weight.  With all of this, I’m suppose to still cart the kids around and [Jon] is pissed at me lately because I don’t want t go to stupid barbeques- GOD! I’m just wore out!”

Me:  “You sound wore out, sweetie.”

Sara:  “I’m sorry.  I must sound like a bitchy, old woman – I need to get it off my chest, though.   I guess I just want someone to hear me and get a break.  [scream] I’ll shut up now.  Okay, enough about me, what have you been up to?”

Me: “Oh, the same as you…”

Now, the truth is, Sara doesn’t have lupus.  I am guessing that she is just overloading herself once again because, like many of us with lupus, she is an over-achiever, ‘Type A’ , control freak.  By tomorrow, all of this will be in the past for her- the lucky stiff.  However, it is important to note that she mentioned several of the Eleven Criteria used to diagnose someone with lupus and the common symptoms .

This post is for those of you who don’t have lupus, but suspect you might.  What is very important for you to understand is that lupus is a disease that mimics and is often minimized because of it.  No matter how insignificant things might seem or how scared you are to face your concerns, you owe it to yourself to find out what’s really going on. To do nothing can, and often does, lead to serious organ involvement and you really don’t want that.  If you are experiencing symptoms like Sara or have some of the other criteria that she didn’t mention, the best way to get your doctor’s attention is to journal.

The things your medical team will be looking for, echoed in blogs, websites and support group conversations everywhere, are signs that you are being responsible and informed about your own health. These criteria are merely guidelines – trust your instincts.  I, personally, didn’t have most of the criteria to warn me and learned of having lupus only after my kidneys nearly failed.  I knew something wasn’t right, but chose to ignore it for a couple of years.

Track your symptoms and be very specific by using quantities, not just quality - document your meals, weight & appetite, sleep patterns, energy levels, lost work hours due to health, hydration, hours spent exercising (BIG ITEM, folks), pain locations, ‘weird’ stuff that comes and goes (or doesn’t go), etc.

In addition, be sure to note your actions taken to address your symptoms – changes in diet, exercise, sleep, etc.  Show your medical team that you are being pro-active in your own self care.  Basically, you need to do a lot of prep work before your 15-minutes in the medical spotlight. 

Make your appointment work for you by taking your health seriously- if you aren’t being heard, exercise your consumer/human rights and go to someone who will listen.  If, after everything including lab work is done, and it turns out that you are simply going through what Sara is going through – great.  At that point, count your blessings and take better care of yourself starting today.  If labs look fine and there isn’t anything conclusive, yet your symptoms persist – keep on tracking and go in for the whole routine again.  There is no one test for lupus and timing is everything - you have to play this lottery to ‘win’ a diagnosis, so stay in the game.

By the end of our talk, I told my friend that she sounds a lot like someone who is just starting out with lupus.  She was silent for a minute – scared, I imagine, since she knows what I ‘ve been through.  Then, I heard her chuckle slightly:

Sara: “Nah, I’m sure its nothing – I can handle it.”

Me:  “Yep, that sounds like someone with lupus, too.”