Showing posts with label Thankfulness. Show all posts
Showing posts with label Thankfulness. Show all posts

Thursday, February 25, 2016

Rest And Be Thankful... An Update

Photo by David Ralph Johnson
"Rest and be thankful."   ~William Wadsworth

I have so much to be thankful for these days. Even in the midst of all that is going on with me health-wise, there is never a moment that I am not thankful for all that I have. On two separate occasions now, my neurologist as taken the time to ask me how I am doing mentally. It's an odd moment when a doctor gets quiet and asks you if you ever think about harming yourself, if you are ready to "give up". A moment packed full of emotion - alarm, embarrassment, defensiveness, worry, confusion.. But even with all of that going on, there is a clear and very focused "me" that says, "No, it's simply not an option." I'm thankful for that. I'm thankful that even in my darkest moments I long for life. I long for my family and my friends. I long to live my days, my moments with the man that I love with all of my heart. These things keep me moving forward. These are the things I take rest in.

I've not yet taken the time to really let people know what has been going on with me the past few months. I've eluded to it in my blog, on facebook and in messages to friends, but I've not really been too public about the nitty gritty. Not so much because I don't want people to know. More because we (myself and my medical team) really have not known. And until things become clear, I would rather not worry people. But, as is usual with these situations, it seems to be dragging on so I thought this would be a good time to give a bit of an update.

Last September, after tapering for months, I finally made it "off" prednisone. The first time since becoming ill in 2009. It was a horrible tapering with an even worse outcome. But I was determined to see what happened. I was determined to see if my body could figure things out on it's own. I wanted to know if I could "recover". Quite often when going off a medication, there is a period where things get worse before they get better. I wanted to know if this would be the case with steroids. Well, for me, it was not. I ended up creating an inflammation process, a kind of domino effect, where all of my tendons and muscles were affected. Wherever there was a tendon...I had tendonitis. I could barely walk. Then it crept into my muscle tissue, causing some rather serious conditions, mainly in my left shoulder. Of which I have had various treatments that have been unsuccessful.

Then it began to affect me neurologically. My doctors immediately put me on higher doses of chemo and steroids. For those of you who understand the medication regimen, my cocktail consists of Cellcept, Methotrexate, Hydroxycholorquine, Prednisone and a host of other medications for symptomatic treatment. A total of 37 pills a day and weekly injections.

These symptoms are quite frightening. I began having weakness and numbness in both arms and legs. It then moved into my torso and my face. This was also accompanied by extreme nerve pain all over, but especially in my legs. Nerve pain that would immediately wake me up out of a deep sleep or prevent me from sleeping altogether. Some days better than others. Some days difficult to even stand upright. This, combined with all the tendon and muscle pain, the fatigue, the headaches, the GI problems - well, it became overwhelming. That's what led to the hospitalization in January. It is also what kicked off all the extensive testing, of which I am still doing.

The number one suspect - MS. It's not the first time they have suspected this. Over the years I have been tested and the results have been inconclusive. I have had one "bad" spinal tap and two "good", although they have not been completely clean. I have five lesions on my brain that have remained unchanged over the years. My neurological exams have declined and the nerve conduction tests have slightly decreased, with some new issues. But nothing that conclusively says that MS is the culprit.

So this is where I am at right now. My team of doctors are working together to decided who should take the lead at this point. If there is no new diagnosis to be added, then my neurologist does not want to be the one deciding which medication I should be on. They all agree that something needs to change. The problem with that is that any "new" medication is going to be quite risky for me. It's a step up (or down, depending on how you look at it) on the scale of possible negative side effects and complications. They're just more dangerous to my already compromised immune system.

I'm still in a holding pattern. Things got a bit delayed the past two weeks when my rheumatologist got ill and was out for two weeks. My team has been good to communicate with me every few days, for that I am extremely thankful. It makes a huge difference to know I'm not lost on the radar. There have also been a number of other things that have kept me going during this time.


And...then there is YOU. My family and friends. Those near and those far who have continually checked up on me. Those of you who have "liked" my posts on facebook, commented on my artwork, BOUGHT my artwork, sent me messages and cards, stopped by for visits and basically supported me every step of the way. For me, oftentimes captive to these four walls, this outpouring of kindness has literally been what brings me through each day.

I am so thankful for you. I hope you know that. I hope you know how important you are to me and how much I cherish your friendship and care of me. I was completely bewildered (and overjoyed) by your response to my need for a new bed. Within less than a month, my dream became a reality because of you. And let me tell you, I could write another thousand words about how helpful this new bed is. Immediately I noticed a change. Immediately I was able to get more hours of restful sleep. Immediately I noticed a difference in my waking hours because of that sleep. All because of the compassion of family and friends. You purchased my artwork and in turn, you gave me rest. What a beautiful thing. Truly, truly beautiful and I thank you with all of my heart.

This has been a tough one, that's for sure. And where I go from here is a somewhat worrisome for me. But this I know - I can do anything with my family and friends beside me. To really know that you are there.

This I take rest in.




Thursday, January 28, 2016

You Get What You Give

Photo by David Ralph Johnson
We don't want to believe it. But it's true. We don't want to believe it because life is hard. It's hard and it's generally not fair. So when someone throws out a platitude like, "You get what you give", we believe it with cautious hesitation at best. Or we don't believe it at all, because we try so damn hard and the bad stuff just keeps on happening. So why try at all?

It doesn't matter who you are or what your particular situation is, we have all had this feeling at some point in our lives. It could be a relationship issue, it could be a career issue, it could be a financial issue, it could be a health issue, it could be a self-esteem issue...however many unfortunate circumstances there are in the world, there are just as many people who can't seem to get a break from them, no matter how hard they try. In fact, some people seem to have no luck at all.

I'm not hear to disagree with the fact that life isn't fair. Because it isn't. Stuff just happens. What I'm here to write about is what we do with that unfair stuff. How do we process it and in the end, how do we react to it. Because, quite frankly, sometimes we forget. Sometimes I forget.

I'm on year seven of fighting Lupus, Sjogren's, RA and a host of other health problems that popped up and tacked on along the way. The beginning was extremely tough. Life threatening tough. The middle was full of ups and downs with lessons learned in between. Currently, I'm not in a good space health-wise at all. I had a flare last September that threw my body into a tailspin and I am fighting desperately to climb back up. Many complications, old and new. Some neurological symptoms that are quite frightening and we are still trying to figure out. Which means lots of trips to the hospital and lots of tests, many which are not very pleasant. And if you know anything about lupus, stress of any kind only exacerbates the problem.

How have I been handling this recent phase? Not very well at all. I feel as though this is probably the lowest I have ever been. And my doctors know it because each one of them has asked me if I think about suicide. Even the doctors in my most recent hospitalization questioned me. I just can't stop crying.

Let me stop the worrying here. I never, never think about suicide. Ever.

Would it be wrong for me to think about suicide. Well, it wouldn't be helpful...but I don't believe it would be wrong. It's a perfectly normal feeling like joy and sadness and worry and fear and all the rest. It just demands a very different action on the part of myself and of those around me. But I do think about not trying. I have a phrase that will get stuck in my head in times like these and it's, "I can't do this anymore." I find that when I'm crying, these are the words that I repeat over and over and over again. Sometimes out loud when my sweet husband holds me in his arms. This is how I felt when I went into the hospital last week. This is how I felt when I went to the hospital yesterday.

And then this happened...

I was a bit worried about my state of mental health the last time I visited my doctors. I knew I needed to kind of "get things under control". Not in a fake way. In a good way. For me and for them. Too much emotion can distract both me and the doctors from the real issues. And I was confident this needed to be about my diseases and not my mental health. So I decided to be as positive as I could and as pleasant as I could to everyone I came into contact with. It was odd, in a way. I felt a little bit like I had lost control of everything and the only thing I had left was to be kind. A bit like giving up in a good way. Maybe that doesn't make sense, but it did to me. So I just smiled.

At each one of my doctor appointments I was met with exceptionally thoughtful nurses. Each one of my doctors spent an unusually extended amount of time with me in which they were not only incredibly compassionate, but went overboard in accommodating me and making themselves available to me when I left their offices (giving me phone numbers and emails...) I even had a doctor walk me down the hall, take my coat and pull the chair out for me when I sat down to schedule my next appointment.

I had an hour or so to spare in between appointments so I visited the hospital gift shop. In there I had the most lovely conversation with three women. Found a great sweater that I bought for myself, tried it on and had everyone in the shop complimenting me. I left the store with the biggest smile on my face only to be greeted in the hallway by someone offering me free coffee - which I needed desperately. I walked down the hallway and toward the pharmacy, which is where I met this man...

Meet Thanh-Tran.

I first saw him as I was walking to get on the elevator. I could hear all this commotion down the hallway and I looked to make sure everything was okay. Noticing that people were all laughing and smiling, I proceeded into the elevator. Just as the doors were about to close, I saw a shadow coming toward me so I put my hand in between the doors to prevent them from closing. As they opened back up, there he stood. About a foot from me with the absolute hugest grin on his face. He was about to step in when he realized the elevator was full. Without hesitation, he put his fingers up to his lips and blew me a kiss and waved good-bye. Without hesitation, I blew him a kiss back and the doors closed. There I stood, my back to about five other people, wondering if anyone else noticed I just blew a kiss to a perfect stranger! All I could do was smile.

I got off the elevator, walked to the pharmacy and found my place in line. Within seconds the man in the bright red beret, red scarf and the American flag tie had entered the room. No, let me clarify. His high pitched, sing-songy, full of life and laughter, Vietnamese infused voice entered the room about ten seconds before he did. Not one person remained unaffected. He shook hands, gave kisses, did little dances, raised his arms in celebration, jiggled his tie and repeated, "America intelligent! Good people! Good doctors! Good life!" he pointed out those he knew across the room with a "Hey! Long time no see!", and those he didn't with a "Hey! You beautiful today!" and walked right over to me.

I got out of line and the two of us sat down together. I had no idea what I was doing.

Within moments I was talking to Thanh-Tran, Vietnam veteran, highly decorated, Vietnam lawyer ranked number one in a class of 3000, married to a retired nurse, father of four, grandfather of seventeen, disseminator of all things positive. In between his little bits of wisdom and snippets of life history, he would would turn his hand palm side up, gently place it under my chin and randomly interject, "You so beautiful. You so intelligent. You so lovely my daughter" and then pick up where he left off. Just like that.

I learned about his love for our country. I learned about his life in Vietnam. I learned about the importance of staying active every day (which was accompanied by a dance befitting some sort of Irish jig). I learned about how important it is to have good friends. I learned about how we have to be thankful for good doctors. I learned about what the pins and metals meant that decorated the front of his beret. I saw pictures of when he was young and living in Vietnam. I saw a picture of his wife and of the little plastic document that seemed to verify it all.

I wanted desperately to capture this moment so I asked him if I could take his picture. He immediately responded with, "You take picture. You. Me." I pulled my phone out of my bag, stood up next to this tiny little man and tried...yes tried to take our picture. Just when I would be ready to take the picture, he would turn his face away from the camera and kiss me on the cheek.

And just like that... He was gone.

But never from my heart. This man changed my world. In the blink of an eye, in the breath of a laugh, in the touch of a hand...he changed my world.

He taught me what I had seemed to forget. "You get what you give." And no one knows this more than Thanh-Tran. You see, you have to put it out there friends. When life isn't fair, when you absolutely need it most, you have to put it out there. You can't lock yourself in that little room of hopelessness and despair. You have to give up the fight. Yes, I said give up the fight. You have to realize you are not in control. Keeping the illusion of control only only keeps us armed and protected and or defenses up. We have to let go. Be vulnerable. Be authentic. And give.

If you're feeling hopeless, give hope to someone. If you're feeling scared, give comfort to someone. If you're feeling sad, give happiness to someone. If you're not feeling loved, love someone. If you're feeling angry, be kind to someone. If you're feeling frustrated, be patient with some one. If you're feeling too tired to care, give compassion to someone. Do something. No matter how small. Give it all up and be human with someone. Relate. Understand. Be vulnerable. You see, you get what you give - and you get it when you need it most.

I believe Thanh-Tran needed a kiss when that elevator started to close. And you know what. I gave it to him. Without thinking. Without hesitation, I blew a perfect stranger
a kiss.



Wednesday, September 26, 2012

Four Years...

This picture was taken a little over a year ago – August to be exact. I had just undergone what was supposed to be a very straight forward cardiac ablation. But because of the complexity of my illnesses and all of the medications I am on, nothing, absolutely nothing is ever straight forward. This particular surgery ended with the largest hematoma in my abdomen that my doctors at the University of Minnesota had ever seen. It was serious business and the recovery took months.

I have had countless situations in the past four years that have begun as simple procedures or administrations of medication and have ended with complex and life threatening circumstances. Too many to count and enough so, that visits to the emergency room bring a tremendous amount of fear to both myself and my family.

I’ve only seen this picture once before. I stumbled upon it, not knowing that it had been taken. The first time I could not even look at it. Not because of my own situation, but because of my daughter Emma, who is sitting next to me in the photo.  This time, in my searching through photos this morning for something to post, I let myself linger a bit. A year has passed since then, and there have been other situations much like this one, where my family has been by my side.  I cannot imagine what they go through.

Four years I have been sick now. Four years they have never left my side. Four years of hospitalizations, emergency room visits, life threatening reactions, coding - four years of chronic illness. Four years, day in and day out, twenty-four hours a day, seven days a week, three hundred and sixty-five days a year – my illness has impacted their life. I will never fully comprehend the affect this has had on their lives. Just looking at the face of my daughter in this picture makes my heart so heavy I begin to weep.

Yet, not once has my husband or any of our seven daughters ever complained. No once have I witnessed their frustration or anger. Not once have I ever heard bitterness or any complaint in regards to the chaos this has brought into our lives. Countless vacations have been canceled, plans have been changed, meals have been disrupted, work and school has been missed – sacrifice after sacrifice has been made on my behalf. At times my illness consumes all that is in its path and nothing shakes their unconditional love for me. Nothing.

I cannot imagine a love so great. I cannot fathom the depth and breadth of such a thing. I can only be present in its grace. That is all I can do. Lay myself open to this gift and simply receive. And then, with all that I have and all that I am – love in return.

To my family,
I love you. I love you beyond anything I could ever imagine.

Thank you for loving me so well. 

         Mom xxoo  

Tuesday, June 5, 2012

Happy Camper

The first weekend in the new camper was a complete success...but not without a few bumps and some great stories. 

Dave took Friday afternoon off so we could get on the road at a decent time. Our destination - Willow River State Park - about 20 minutes from our front door. Perfect for our "trial run". Plus, the kids had end of the year projects requiring them to be home at different times, so the close destination allowed Dave to shuttle them back and forth. This was definitely not a relaxing weekend, especially for Dave. But wonderful nonetheless!

Camper loaded, we jumped on the two lane highway that would lead us to our final destination. It was a perfect day. Sunshine, cool breeze and nothin' but shit-eatin grins covering both of our faces. And then...


These are the tracks that were left by the car that lost control in the opposite lane and screeched toward us in our lane. Yes, our lane is the one to the right. In the blink of an eye. It was the closest I have ever been to a real head on collision. HOW Dave managed to move the van and trailer over quick enough without losing control still dumbfounds me. Brakes locked, the oncoming car barely squeezed between our trailer and the line of cars in the other lane. The roads were packed! Three cars wide, this crazy driver managed to maneuver his way out of the middle and back into the correct lane without damage. We pulled off into the parking lot of the campground and sat in disbelief. All Dave could say was, "What just happened?" Crazy.

Happy to be alive, we put the near miss behind us and headed to our spot in the woods. It might be good to mention here the importance of looking at all the sites prior to making one's reservation instead of assuming that all spots will look like the ones previously camped at.

This was our spot in the woods...

Not really the "surrounded by the depth of the forest" I was looking for. But hey! This is a trial run, I'm happy to be alive and I'm ready to set up home in the camper of my dreams! Life is good.

Dave took care of all the outdoor set-up and I went inside to make a pot of coffee. (Oh....the stress of it all...) Here is a shot of Dave drinking his first cup of coffee. It's the simple things, isn't it? 

I figured out that by leaving the front window cover down, I did not have to look at the highway where we just about ended our lives. Out of sight, out of mind!

This is a picture of Dave's parents, Ralph and Bernice. It is their life and love that made this camper a reality for us. Never will a camping trip go by without this picture at the head of our table. These smiles, a constant reminder of their love for family, for travel and for the great outdoors.

We love you Mom and Dad. 

Our first guests were Anna and Evan. They came for supper the first evening and had to head back for jobs in the morning. After supper Dave made a fire and we sat and visited while eating smores for desert. It was the perfect ending to our first day.

Sara was the first daughter to sleep in the camper. This is her pretending to be asleep for the picture!

This is Dave REALLY asleep. Exhausted from the days events, all it took was getting horizontal and he was out like a light!

Sara got to pick out the first breakfast of the trip and she ordered up pancakes. Other than getting used to new heat, a different pan and a sticky spatula...they turned out pretty good.

I think this is the look of satisfaction...and a full tummy.

Bound and determined to get me into the woods, Dave decided that he would take a look around.

And by 5:00pm on our second day, he did exactly that. THIS is spot #2! Smack dab in the middle of the forest! He found a site that did not have a reservation sticker on it, confirmed that it was a "no show" and waited up at the ranger station until five minutes after the official deadline for cancellation.

A man with a mission...

"RRrrrrr....I have created fire!"

Emma was the second daughter to stay with us. Her boyfriend, Tucker, brought her out and they spent the evening around the fire with us. Before Tucker took off for the night we polished off what was left of the smores. It was a wonderful ending to our second night of camping.

This is Emma drinking hot chocolate by the morning campfire. She ordered eggs, bacon and toast for her breakfast, so this is her patiently waiting...

...while I fried up breakfast inside!! My daughter Anna was talking the other day about Dave and how he always has a way of making things easier for people. He's great at fixing things and even better at making good things AMAZING. She then said it would not surprise her if one day I could do everything I need to do from bed...well folks, this comes pretty close!

I'll leave you with a couple of shots that Dave took on his journeys out and about last weekend. With this being our "trial run" and all that it takes to get things set up, there was not much time for relaxing. But he did manage to sneak out Sunday morning and make it to the falls.

We're definitely hooked! We came home that night and immediately started working on reservations for the rest of the summer. Having a small camper means less work inside for me, plus all the comforts of home that make this a possibility for someone who does not always feel so great. As I walked around in the woods on Sunday I found myself on the verge of tears...good tears. I honestly never thought I would be able to do this again. And smelling the smells of woods and campfire, watching parents walk their children along the paths, hearing the birds wind down the day and greet me in the morning - it made me incredibly full. Full of thankfulness and joy to be alive. I told Dave, when we made this decision, that this was one of the biggest items on my bucket list. In fact, it was number one. Now, how many people can say they've checked off number one?

Imagine that!



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 ~

Thursday, January 5, 2012

From The Inside Out

This morning is our first day back in the routine of things. Two dogs at my feet, a cat curled up in the corner and a stillness settles around me. The rhythmic on and off of the furnace reminds me of the blessings I tend to misplace when life gets busy. It was a good, but difficult holiday. The flu spared not one of us - eleven total. Pneumonia for the hardest hit. Oh, the gift that keeps on giving! As I sit here, still quite under the weather myself - this is the view from my desk. I literally just reached for the camera and clicked out my window.
Funny, how I am. Unable to stand for more than five minutes, weak and feverish, the first thing I did this morning, once the house cleared, was to make a list of what needs to be done. I do this when life gets a bit chaotic. Over a week of adult children and teenagers will do that to a household. I think, what I am looking for when I do this, is some sort of control...or the misconception that controlling my life will somehow alleviate my present suffering. It seems no matter how much I know the opposite to be true, in my moments of "unconsciousness", old habits flow smooth.
I'm thankful for the view. In the quiet moments of my morning, the connection to Nature is what brings me home. The sun rising over hoar frosted pines reminds me of the constant movement of life - like a river - still in it's wholeness, yet full of wild and wonderful currents. There is no stopping this constant change. It comforts me - the newness of each breath. The rebirth of all things, over and over and over again. Because, I am part of this great circle. It is my acceptance of this wonderful miracle called Life, this ever changing state of all things, that reconnects me with Being. It is my resistance to this that brings me my suffering - not the flu, not the piles of laundry, not the refrigerator full of molding leftovers - but my mind, fighting against the current, grasping for control, filling my head full of "should-bes" and "what-ifs". 

Today, I am still sick.
Today, I will be compassionate towards myself.
This is the most important thing we do.

From the inside, looking out...
Life is so very beautiful. 

The sun, waking the earth like the gentle hand of a mother, warm and tender. 
Reminding us all of our place in this new day.



Thursday, December 8, 2011

New Diagnosis...A Matter of Perspective

Life's A Comic Strip

You know, sometimes that's just the way it is! We've all been there. I remember when I totaled the very first new car I had ever owned. Long story, but in the midst of a July move, I inadvertently left a deep freezer worth of poultry and beef in the back seat of my new Saturn...for a week. Needless to say, there was nothing that could be done. The insurance company said, and I quote, "We have to handle this just like a dead body." Gross.
But what I remember most is how many people said to me, gosh, you got another new car out of the deal! Yes, I guess I did. But in the end it added about $5000 onto my loan since the previous car depreciated the minute I drove it off the lot. Not really what I had originally  intended! I would have much rather kept my old new car.

It is a matter of perspective, I guess. In the end, everything is. How I choose to look at something, the story I choose to tell myself, is exactly that. A story.

The week of Thanksgiving I finally met up with my rheumatologist. It's been a tough couple of months and I was pretty eager to find out what was/IS going on with my crazy overactive immune system. I managed to get down to about 2mg on the prednisone taper regimen when all autoimmune hell broke loose. Basically, what that means for me is this. Think about when you get sick. Your body has a response to that illness - be it virus or bacteria. It is that response that actually makes you feel sick. For example, if the membranes of your nose or throat become inflamed by toxins, your immune response is to sneeze. If  your lungs become infected, there is a stimulation of sensory nerves in the lining of the respiratory passages that create the reflex to cough, thereby expelling and clearing the lungs of those toxins. When viruses or bacteria find there way into your body, your body may respond by initiating a fever. This complex process (which can be quite painful and dangerous if out of control) raises your bodies temperature in order to create an environment in which the virus or bacteria cannot survive. Without the fever, the body would not be able to overcome these toxins. And the same is true for vomiting and diarrhea. Both responses eventually rid either the upper or lower GI tract of toxins that have taken up unwanted residence there. The immune system is an amazingly elaborate and complicated system, recognizing invaders, putting up barriers to prevent those invaders from attacking  vital organs and eventually destroying the ones that do manage to "get through"! It's wonderful...when it works.

In autoimmunity, the immune system's ability to recognize what's foreign and what's part of your own body breaks down in some way. Thinking that cells or tissues or organs are foreign invaders, the immune system moves into action to be rid the body of these invaders. So in a very small nutshell, what this means is that the body of someone with autoimmune disease is constantly in response to what it thinks is toxic. For someone like me, with multiple autoimmune diseases, my body is attacking multiple systems and organs thinking that they are foreign. That's why, quite often my response to the question, "How do you feel?" is answered with, "I feel like I have the flu...all the time." My body is in constant attack mode. If left unchecked (this is where all those nasty drugs come in) then eventually my body would succeed at wiping out things like my pancreas, my liver, my kidneys, my nervous system, my skin, my hair.... the list goes on.  Up until two weeks ago, my primary diagnosis were Lupus, Sjogren's and RA. I have now added Ankylosing Spondylitis to my list, which accounts for the increased pain and stiffness in my spine.

So, why tell you all of this? A couple of reasons. One, the more sick I am, the more people want to know what exactly is wrong with me. It's a hard question to answer sometimes. Quite often I just don't have the energy to explain. Or, as is sometimes the case, people don't really want to know the answer. Not because of a lack of care or concern, but more just because the simple asking is out of politeness and not so much out of a want to least right then and there. I get that. And seriously, I have no problem with it. In most situations, the lack of really wanting to know pretty much matches my lack of wanting to explain! (I hope that makes sense). I'm totally cool with being polite!

Two, I want you to know how I'm managing with this new diagnosis. And this is it...
I'm good.
I really am good.

This is the deal. Am I sick of being sick sometimes? You bet!! But That's where the story stops. This illness, this disease is not me. I do not wonder what evil force is out there working desperately against me. I do not wonder what causes pain and suffering in this body or in this world, nor do I sit and wonder why things happen to me or if I  will eventually find the end of my coping rope! It just is what it is. Period. Attaching "good" or "bad" to a situation is my doing, and has nothing to do with the actual situation. I thought having to pay $5000 for a second new car was a "bad" situation. But what if that first new car had a malfunctioning wire that would have eventually led to it spontaneously exploding while I was driving. Would I then tell myself, "Wow, good thing I had to get rid of that car!" Well, was it a good thing or a bad thing? Neither!

The Venerable Ajan Chah says this,
If your house is flooded or burnt to the ground, whatever the threat to it, let it concern only the house. If there's a flood, don't let it flood your mind. If there's a fire, don't let it burn your heart. Let it be merely the house, that which is outside of you, that is flooded or burned. Now is the time to allow the mind to let go of attachments.
So when you ask me, "How are you?", if I don't tell you I feel like I have the flu, most likely you will hear me say something like this, "I'm good!" I'm good despite my diseases, not because of them. I'm good because when I look out my window I see the most beautiful row of pine trees covered in new fallen snow. I'm good because when I sit out on my deck I feel the healing warmth of the winter sun on my face. I'm good because I am surrounded by a loving family, an amazing husband and the caring hands and hearts of so many friends. I'm good because every single thing I need, I have within me, this very moment. And no fire, no flood, no disease can ever take that away.

I have so much to be thankful for.


Tuesday, November 22, 2011

An Oasis Cafe Thanksgiving

These are my hands, gently cradling a warm coffee cup as I sit across the booth from my husband at the Oasis Cafe. A wonderful little spot tucked in the side of a hill of limestone on the outskirts of downtown Stillwater, Minnesota. Stepping into the Oasis is like stepping back in time...or stepping into your grandmother's kitchen. Old booths, old kitchen, glass pie cupboards, swivel stools occupied by old farmers and spinning two year old's - it's comforting, like a warm blanket or a friend's hug. It always smells like Sunday dinner or Sunday breakfast or just Sunday anything.

I don't bring much into the Oasis Cafe. No laptops, no books, no emotional baggage or heady to-do lists. And I never go there if I don't have time. For some reason, when I settle myself into that green Naugahyde booth the world gets softer. Breath comes easier.

I could go on and on about the food, but I think you get the picture. Everything's home made. Daily specials scratched onto an old black board bring lottery ticket anticipation - $3.95 plus pie! Everyone's a winner.

But my favorite thing about the Oasis is not the coffee or the booths or the meatloaf. My favorite part of being at the Oasis is being there with my husband. Just being there. He always looks so handsome. I think maybe, he too, lets go of the world while he's there. Leaving project management and home repair behind, his brow un-furrows as he holds my hand across the speckled Formica table top. Talk is slow, quiet and sometimes not at all.

As I sit here writing this to you, today is the Tuesday before Thanksgiving. By this time I am usually in panic mode, but that was PS (Post Sick) and things are different now. They have to be. Panic is an energy sucking emotion I just cannot afford to have. Some of my ability to avoid this negative mental state is due to changes I have made in my perception of this life. Some comes from learning how to let go. And some comes from just being prepared. Originally, I had decided that we would not be entertaining this Thanksgiving at all. A decision that came difficult, but was necessary due to the aforementioned (previous post) health issues. But thanks to a most dear friend, Thanksgiving will be served in our home, although I will not be the one preparing it - she will. Yes, my lovely readers, there are angels among us.

So, what do the Oasis Cafe and Thanksgiving have to do with each other?  A lot...I hope.
When I think of what I most want this Thanksgiving, when I peel back the layers of hostess pomp and circumstance, when I think of all that matters most to me - it is this... I want an Oasis Cafe Thanksgiving. I want to leave the lap tops, books, emotional baggage and worries of this world outside my front door. I want to really smell the aroma of home cooked food, being mindful of all the hands that planted it, raised it, harvested it and prepared it. I want to feel my connection to this earth - taste the sun and soil from which it came in each and every bite.

I want to look across the table at my family and friends - really look - and breathe in the beauty of their spirit. Being mindful of all that they are, of the miles they have traversed, the sacrifices they have made to sit with me in my kitchen. I want them to know how very thankful I am that they are with me. I want them to know how handsome they are, how precious their lives are and how their very being fills me with joy. I want to sit with them, talking slow, laughing hard and loving much. I have missed far too many moments in my life exhausted, stressed, preoccupied with matters such as clean floors, quickly washed dishes and perfect desserts.

This time around...I'm going to have an Oasis Cafe Thanksgiving.         I hope you'll join me. 

"For each of us food is the source of sustenance, 
the basis of life; 
and when we offer this gift to one another, 
we are not only nourishing each other’s bodies, 
we are feeding one another’s spirits. 
So receive – and give – the food of your life as the powerful gift that it is.”

                                                                                                                          ~ Daphne Rose Kingma


Tuesday, May 24, 2011

Joy In the Doing

"The peace that comes with surrendered action 
turns into a sense of aliveness 
when you actually enjoy 
what you are doing." 

Eckhart Tolle 

I have never enjoyed peeling potatoes, really. I think part of the issue for me, is the timing. If you're making mashed potatoes, it's usually just about the last thing you do when preparing a big meal. The roast is done, the chicken has been fried, the ham is cut... Until later in my life, when I stumbled upon the glorious invention of "make ahead mashed potatoes", this task had always required quick peeling, fast mashing and a well-timed table delivery. Because of this, I had earned the title of "fastest peeler in the house". Which inevitably secured my position as chief potato peeler for all time...and eternity...times infinity...and beyond. Lucky me.

And then I got sick. Lot's of things have changed since my becoming ill. And almost all of them have been for the better.

Four generations.
My great-grandmother was a quiet women, at least when I knew her. The picture to the left was taken about twenty-seven years ago. It's a four generation picture of myself, my mother, her mother and my great-grandmother, Hazel Stanley. I wish I had more memories of my great-grandmother. However, out of the few that I have, one that has remained in my mind over time is that of her peeling potatoes. As you can see in the photo to the left, she was a tiny woman. When she would peel potatoes she would sit at the kitchen table, barely tall enough to rest her elbows on the wood. Knife in hand, newspaper below and a bowl by her side, she slowly peeled each potato with a patience and grace that only today do I understand. Unlike the harried, knuckle shaving manner in which I peeled potatoes, she sat peacefully with an open invitation for conversation.

They say that as we get older, we begin to un-clutter our minds. It is part of our Returning in the great circle of life. The gift that this gives us is space. And when we create space in our minds, we find beauty and joy in the simple things. If we are lucky, we figure this out before we grow old. From what I hear of my great-grandmother, she was one of the lucky ones.

I now sit when I peel potatoes. Fatigue and weakness demand it of me. There is no fighting it, no pressing on, no motherly martyrdom, no rush to the finish line. And just as old ages gifts us with a holy un-cluttering, so does illness. I suppose I could fight it. I'm not really sure for how long. But instead, I have chosen to surrender. The kind of surrender that comes from accepting what this moment requires of me...and doing so willingly. And performing any task in a state of acceptance means you are at peace while you do it.

This past weekend I needed to peel some potatoes for a salad we were bringing to a family dinner. I didn't wait until the last minute to do so, because I know better. If I can't finish the job, I need time to ask for help. So I started early in the day, with a certain mindfulness. In a way, I tried to feel what it was like to be my great-grandmother. I thought about her actions, the shape of her hands, the soft smile on her face. I peeled slowly, looking at my own hands. Feeling the dirt left behind on the skin, smelling the earth - connecting it all in my mind. Circles upon circles, connected as one.

And the next thing I knew... I was no longer peeling potatoes. At least not continuously. 

 I had a lovely conversation with Maggie.

I realized that while I was sitting there, life was happening. Waiting for me to participate. Like the watchful eye of Jake, wondering when I'll notice. Pleased at my acknowledging.

I did finish peeling the potatoes - eventually. To be honest, I completely lost track of time. It's funny, I've always looked at the whole ordeal as a sort of "means to an end". I didn't enjoy the peeling...but I sure did enjoy the potato salad! Isn't that how we spend much of our life? Doing this to get that. Waiting for the meaningful. I'll be happy when... I'll rest when... I'll have a good time when... Tomorrow I'll...When you make what you are doing in this moment the focal point of your life, your ability to take pleasure in what you do - and the quality of your life - increases greatly. You don't have to wait for some other time, for something meaningful to happen to start living - Joy is yours now. And the next thing you know - irritating, stressful, boring tasks become enjoyable.

Eckhart Tolle says that, "when awakened consciousness takes over, you may find that an activity that you have been engaged in for a long time naturally begins to expand into something much bigger when it becomes empowered by consciousness." Well, he's right...

As I held my camera that afternoon, I was slowly drawn outside by the moment. Life indeed, was happening all around me.

...filling my rock garden

...bursting in pots

...creeping along beds

...breaking through soil

...sleeping under my deck.

I'm not suggesting that potato peeling should always include an afternoon photo shoot. Most days we just need to get the job done! I think what I'm trying to say is that by un-cluttering our minds, creating space in our thoughts and finding joy in what we do, we not only enrich our lives, but we have the capacity to enrich the lives of those around us. We become instruments of peace. The 14th century Persian poet Hafiz states most eloquently when he writes, "I am the hole in a flute that the Christ's breath moves through. Listen to the music."

I wonder if my great-grandmother new she was enriching my life when she sat quietly in the kitchen peeling her potatoes. Like the seeds that fall in my wildflower garden every autumn, carried gently on the breeze - you never really know when life takes hold. But I am very sure of this -

What is miraculous is what comes through us into this world.