Thursday, May 31, 2012

Sinking The Boat...and other great ideas!

I remember this moment as if it were yesterday.  This was our first stop on an island that what would soon become our favorite spot in the boundary waters canoe area of northern Minnesota.  We had not been resting long when my husband looked at me and said, “I think I’ll try to sink the canoe.”  The fact that this was my very first canoe trip, combined with the fact that we were a long, long way from any sort of civilization, as well as any cell phone reception, made this comment one of great concern to me. Doing the best I could to hold back any indication of doubt or panic, I simply said, “Why would you do that honey?”  He went on to explain to me that all canoes must be tested to see if they float after being capsized. He and his father had tested the canoe many years prior after they had first built it, but since he had re-fiberglassed it recently and made some fixes he had not yet tested it again to see if it would float.

I still didn’t like the idea. What if it didn’t float? What if we couldn’t get it back out of the water? What if we damaged it – this beautiful forty-year-old canoe? What if…? I simply did not want him to do it and I remember a bit of an argument because of his determination to find out. And so, with me standing on shore ready to take a picture of this most sure disaster to come, he gently rocked the canoe back and forth. With each dip the water slowly filled the canoe until only the stern and bow could be seen.  And then, in a moment of silent stillness, he stood and waited. Holding tightly to the rope, he watched as the slack let go and the canoe floated gently, barley above the water’s surface. The moment captured here in this photo.

My husband has taught me a great deal about fear; mostly, how to respect it and learn from it – and not run from it. It’s taken me books upon books to understand something that has always been second nature to him. Reality is exactly that – REALity. It’s what’s REAL. And it is far better to move towards that which is real than to struggle against it or worse yet, to pretend it does not exist.

This does not mean that life will always be easy. There’s risk and vulnerability involved. And sometimes we have to take on a lot of water before we realize whether or not we can float. But it’s not until we understand the truth of the matter that we can live in the honesty where joy and freedom reside. It’s in this space that we experience this world fully – not holding back, not preparing an escape route, not looking for alternatives – living fully in the reality of the present moment. 


I wrote this post for my facebook page today. Sometimes the idea for what I want to write comes to me with little to no work involved. This often happens when I have been reading something really good or I have had some sort of event in my life that demands my writing of it. And then, there are other times when I go looking. Today was one of those days. I often start by either flipping through some of my favorite books or I begin to scour the thousands and thousands of photos my husband has on file, waiting for something to jump out at me. The flipping didn't work. Nothing seemed to grab my attention. So I opened up our picture warehouse and began my perusing. Immediately, this photo pulled me in. 

I've looked at this picture hundreds of times. It's in our BWCA 2008 folder and is one of my favorite places to look. The trip itself changed my life. But for some reason, this picture told me something different today. As is often the case, it told me what is going on inside of me. Which, of course, I did not realize until I finished the writing! Kind of like a dream will do upon waking. 

I had a "boat load" of appointments over the past two weeks. It seems like my main doctors reached their six month evaluation point all at the same time. But it was during these visits that I made some rather big decisions. Decisions that came on the heels of a lot of pain and frustration. Decisions based on the potential for serious long term side effects, the ongoing inability to recuperate from chemo therapies and the recent "leveling off" of certain blood work. I have decided once again to try and taper off the prednisone that I have been on for three years as well as taper off the IVIg infusions. 

I've tried twice before to taper off the prednisone, only to return back to higher dose due to intense pain and illness. Prednisone is the drug people "love to hate", or so the saying goes. It's a miracle drug in regards to my illness, but the side effects, both long and short term, have serious consequences. But after reading Coping With Prednisone by Eugenia Zuckerman and Julie R. Ingelfinger, M.D., I have come to the conclusion that I have not given tapering a fare shake. In a nut shell, it is normal to feel extremely ill during the tapering and for months thereafter. As I gauge what I was experiencing with what seems to be acceptable withdrawal, I have decided that I can give this another chance. But I'd be lying if I did not tell you that it scares the shit out of me. 

In regards to the IGIg, this is my thinking. I've been on infusions for well over two years. When I began on them I was not on two of the other major chemo therapies that I am on. I would like to see if these drugs alone can manage my illness. The IVIg was not treating the autoimmune illness itself, it was treating a symptom - the peripheral and central nervous system issues I have been having. The other drugs I am on actually control the illness itself. It could be quite possible that these medications are now keeping things in check and I would no longer need the infusions. And the only way to find out is to fill the boat with water!

My initial reaction to these thoughts as they entered my mind was pure fear. Fear of the "what if". But as I worked through the fear what I realized was that my hesitation in attempting this was based out of my belief that I could somehow control my illness. A control that had become blind to ALL possibilities. Which meant that maybe, just maybe, letting go would bring about something better and not necessarily something worse. Once I realized this, I felt very compelled to speak to my main doctor about it. The appointment went very well and we were both in agreement as to what should be done. Let's see if the boat floats!

So here I am, week three on my first decrease of prednisone and one half infusion later, and I'm feeling pretty shitty - but giving it my best shot! I have to say, I'm not that thrilled about potentially messing up my summer with withdrawal symptoms. But is there really any good time? Nope! No time like the present, that's what I always say!

I do have some exciting news to report!! As many of you already know, being outdoors has always been very important to me. There is no holier place for me than the depth of the woods, surrounded by Nature. I have not been camping since getting sick. In fact, there is quite a dissertation in my application for social security in regards to the things I no longer can do, and camping is a big part of that. There is just no way that I could withstand the amount of work it would take to set up camp, let alone sleep on the cold ground, be without heat or cooling (whichever the case may be) or especially be any distance from a bathroom.

So this is my most recent anniversary gift (coming up on June 4th!)...

Completely loaded with one of these... ;-)

 ...and one of these...

....and some of these...

...and air conditioning...and heat...and all the amenities of HOME, right there in the woods with you!!!

Now, in my pre-illness days, I would have shunned this whole camper idea with all the piousness of a die-hard naturalist. But today....this little home away from home has made my dream of being out in the woods a reality again. 

Did I mention I have the best husband EVER?!?! Just can't imagine how I ever got so blessed. 

So, our first attempt will be this weekend, about 15 minutes from our real home as to not travel too far away this first go-around. I can hardly wait. Now THIS will most surely give me something to write about!

Until then, peace to us all ~

Tuesday, May 8, 2012

What You Don't See

This is my current Facebook profile picture. 

May 2, 2012

This was my Facebook profile picture on March 22, 2012.

...and January 7, 2012

...and December 4, 2011

...and October 19, 2011.


This is me today. In fact, this is me almost every day.

Minus the make up,
minus the wonders of Adobe Photoshop,
any pretense.

May is lupus Awareness Month. If you didn't know me, or have lupus yourself, or actually know someone with lupus, you most likely would not even know this small piece of trivia. You might not even know what lupus is. Four years ago, before getting sick, I sure didn't.

Each day this month various lupus Facebook pages have been posting interesting and informative snippets of information to help bring awareness to people in regards to lupus. Most of the information I already know, but every now and then, something shows up that I was not aware of and I am reminded of how important these communities are to me. 

But, if I had to guess, the average person on Facebook probably does not "Like" these particular pages. In fact, I don't imagine my friends and family even do. So if one does not "Like" a particular page, then one does not receive the "informative snippets of information" that is sends out every day. Which got me thinking...

What do I want you to know? What do I want you to really know

In fact, what if I only had one thing I could write about today? What would it be? 

It would be this...

Lupus can be a very invisible illness. Because of the chronic nature of the disease, those who have lupus must learn how to manage with the illness on a daily basis, every days a week, 365 days a year...every single day of their life. Mothers continue to care for their children, fathers go to work, students go to school, people mow their lawns, cook their meals, shovel their walks, go to social events...all the while struggling with issues such as severe joint and muscle pain, nausea, vomiting, headaches, painful skin conditions, vision problems, kidney failure, cognitive difficulties... the list goes on. And most days, if you were to look at any one of these people you would have no idea the suffering they are enduring. 

I've been very fortunate in my life. I have a supportive family and a beautiful circle of friends that refuse NOT to know the real me. Not even Photoshop pulls the wool over their eyes, and I simply cannot imagine it any other way. But there are many out there who travel this journey completely alone. I hear stories every day of partners and spouses that are unable to fulfill their roles as caretakers. I hear stories of comments spoken by well meaning friends and acquaintances that absolutely break my heart. A simple "you don't look sick" can pierce like a knife when you're standing there suffering silently. Even the tone of it seems to imply you must not be sick then. Yet, "You look nice" is such a lovely comment to get and does nothing to imply any conclusions about whether or not I am sick.   

It took a lot for me to post that last picture. Not out of any sort of vanity, heaven knows I'm way beyond that whole concept! But because just like everyone else struggling with this disease every day of their life, I work really hard to....yep, you guessed it...not look sick.  And therein lies the crux. Like my mother always said, "You're damned if you do and damned if you don't!"

So what advice do I have to give? What snippet could I leave you with today that might actually make a difference? I think it would be this. And this pertains to anyone you meet in your life. 

We must always do our best to not make any assumptions. 

Because we just never know. The person standing before you could be struggling with depression, they could be victim of domestic violence or they could be suffering silently from a disease such as lupus. We just never know. Assuming anything because someone looks happy or dresses well or just happens to be out for the night is an assumption we must not make.  

Looking at our friends and loved ones through the eyes of compassion, trusting that their journey is exactly that - their journey and loving with our whole hearts is what we can do. 

I recently received a post on my Facebook wall that said this,

The average person tells 4 lies a day or 1460 a year; 

 a total of 87,600 by the age of 60. 
And the most common lie is...
I'm fine.

Who knows if this is true. I actually think the numbers should be much higher, especially if we take into consideration all the lies we tell ourselves! Either way, this does not make the job of caretaker or friend very easy. I will be the first to say that I could do much better at being honest and letting others know when I am sick. Just remember that those living with chronic illness are managing the best they can each day with something that will never go away. Actually admitting you don't feel well every time you don't feel well...well, even WE get tired of hearing about it!

If you would like more information on lupus and how you can help bring awareness to your community, please visit The Lupus Foundation of America.


Friday, May 4, 2012

All Else Is Madness

“See if you catch yourself complaining, in either speech or thought, about a situation you find yourself in, what other people do or say, your surroundings, your life situation, even the weather. To complain is always non-acceptance if what is. It invariably carries an unconscious negative charge. When you complain, you make yourself into a victim. When you speak out, you are in power. So change the situation by taking action or by speaking out if necessary or possible; leave the situation or accept it. All else is madness.”

Leave the situation or accept it... If we don't choose one or the other, what are we left with?
Suffering, plain and simple.

In some situations, we have no choice. I can't change the weather, and I most definitely cannot change being sick. So I can either linger in my miserableness - believing the untruth that it will somehow help - or...OR I can accept my circumstances and live in a place of power. Knowing I am the creator of my own happiness, my own peace.

As someone suffering from chronic illness, understanding this truth can be one of the greatest contributing factors to my well-being. Realizing and exercising my power to either accept a situation or to leave it creates an environment in which I can move freely in my life and not waste my energy existing in a place of friction.

If I utilize my place of power in order to accept my situation, what does that look like? Let's say all week I looked forward to Thursday to write in my blog. In my mind, the stars would all align on this day - kids gone, husband gone, laundry done, no doctor's appointments... It's not only the perfect day, it's the only day. But guess what? Thursday I wake up sick. Body hurts, bowels don't work, brain in a complete fog. THIS was really my Thursday. Disheartened and frustrated, I crawled out of bed, lit my favorite candles (maybe creating the mood will help) and plopped down in front of the computer. Let me tell was painful. Type...delete...type...delete...type...delete. Pick up a book to get some ideas. Type...delete...type...delete. Go get something to eat, make some tea. Type...delete...type...delete. You get the picture. Friction is not a pleasant state of being. The minute I gave myself permission - the minute I decided that I didn't want to be in this place, a beautiful calm came over me and I got to ask myself the open ended question of, "Now what can I do?" You see, it isn't about being defeated. It isn't about waving the white flag at all. It's about accepting reality and realizing I have the choice to create my own happiness.

If I utilize my place of power in order to leave my situation, what does that look like? Often times, we remain in limbo, in that place of untruth in order to not let someone down. It could be ourselves or it could be someone else. For me, many times this is the case with family members. Let's say I have an understanding with myself. When I am really, really sick, can't get out of bed kind of sick, I have no problem letting my family take care of me. I simply don't have a choice. But there is also what I refer to as the gray area of my sickness. Opposite of being down for the count is a great day. The kind of day that fools me into thinking I'm not really sick. These are my best days. In the middle of these two extremes is where I live most of my life. Working really hard to not look sick and keeping things in a state of normalcy. I do this mostly because my family has been through a great deal with my illnesses and if I can help it, I like to give them a break. This is also a place where I quite frequently live in limbo - in that place of untruth.

A classic example would be cleaning up the kitchen after supper. For me, this is a very difficult task. By this time of the day I am usually feeling quite sick. It is also one of those tasks that, prior to becoming ill, was always something I enjoyed. (yes, I'm weird) I love taking care of my family, I always have. Letting everyone sit and visit after a meal has been a gift freely given. My family is fantastic at helping me in many other areas, but in this particular situation, I like giving them a break.  But I have noticed as of late, that what I want to do, and what I should do are not in alignment. First of all, I am suffering physically. That's the obvious. Second of all, my mind is suffering. The thoughts I am thinking are not consistent with what my actions are intending. This is a snippet of my brain... I can't do this...just get the table cleared off...I can't do this...just put the food away...why won't they just offer to help...just let them go...I can't do week I'm gonna have a family meeting...oh, they're so happy, just let them go...I don't want them to worry...just wash, don't worry about drying...ugh, I wish they would help me put these dishes away...I think I need to sit down...once again, you get the picture. I can promise you, as long as I do not accept the reality of what is and continue to make myself the victim - albeit a martyr with the very best of intentions - I will suffer . And so will my family.

It's crazy what we tell ourselves really, if you seriously give it some thought. There are always two choices, and two choices only. Accept or leave. Unless, of course, we enjoy remaining in limbo, convincing ourselves that complaining (or sadness, or anger, or bitterness, or hopelessness, or fear, or worry...) will somehow miraculously change our situation. Suffering is caused by being "here" and wanting to be "there". Once we empower ourselves with the choice to either accept or leave, then the door is wide open, and true change happens. Change of heart, change of circumstances...change of life, where there is no inner conflict, no resistance and no negativity. And where there is no inner conflict -

Peace resides.

...and maybe a little madness!