Memorial Day

As with most holidays, our culture has created a  tradition whereby holidays become associated with celebrations of no relation at all. For example, Christ's birth has become all about Santa and gifts. The death and resurrection of Christ has become all about colored eggs and an over sized bunny rabbit. Memorial Day seems to be about a three-day weekend and burgers.

There are men and women in war zones all over the world, protecting my very right to write these words and to live in this democratic society. Yet there is no significant way we, as Americans, do to make our gratitude known for all who have served in our military, past, present and future.

It's ironic, because I venture to say that the people who get a three day weekend are NOT those serving our nation. The males and females in the military are scattered around the world, seeing and doing things no individual ever should, existing in rough environments far, far away from their families. They aren't the ones enjoying the cookouts and long weekends.

I know our society isn't likely going to change its way to celebrate a holiday, but we can all take steps towards a change. Many of us have family and/or friends who have served in our military. Going forward, all it takes is a phone call or a text to express our gratitude. Love is a great ways to show appreciation, and it costs nothing.

God Bless America and all those who are serving our great nation, yesterday, today and tomorrow!

Memories of Mimi

I am so blessed to have one living grandparent, my grandma Evelyn Jorgensen, aka "Mimi".  I have so many memories of growing up with her in my life, so I thought I would share some of them for Mother's Day.

When my mom went into labor with Keith, I went to stay with my Mimi and Bapa. I recall her putting a steel washtub in the courtyard of the home I now share with my mom. She filled it with water and dish soap, and I was allowed to strip naked and take a bath out among the squirrels and birds. It was the best bath ever. I felt like a cross between a princess and Mowgli the Jungle Child.

She would come pick me up at my preschool at Jeffrey Mansion in a red pickup truck and a mink coat. The macaroni and cheese standard was set at the top with Stouffer's Mac and Cheese that she cooked in the oven, always having a bubbly top layer. I would take her concentrated frozen orange juice cans and she's throw it in a blender with some ice, and voila, a delicious orange smoothie. The poor woman was probably always out of O.J.

I spent most of my time either riding Charlie the Wooden Horse around the driveway or playing with a stuffed camel named Noodles who had long, spider-like, black eye lashes. To this day, I'm still searching for a mascara that could make my lashes measure up to Charlie's.

To sum it up, I was spoiled.

As I grew up, Mimi and I started developing a more mature relationship. I was standing in her kitchen when she asked me if I had fallen of the roof yet, and I had no idea what the heck she was talking about. I'd been having my period for years, but I wasn't one to play up in the gutters. I would visit she and my grandpa in Florida, and we would shop and eat and do all kinds of girlie stuff together.

I can't say exactly when we became good friends on TOP of having a great grandma-granddaughter relationship, but it happened. After my grandfather passed, I would go visit her in Florida, and we would have long talks over tea sitting in the living room of her condo. At some point we called our chats "pouring tea", as we were pouring our love and thoughts into each other. To this day, she still has a Willow Tree angel holding a tea pot that I gave her one Christmas. I have one, too. It always reminds me of her.

Mimi and I have done a lot of growing up together. We've had the pleasure of truly getting to know each other. I've heard her stories of growing up as one of ten children in a small town in Michigan. She doesn't travel anymore, but her stories keep the memories alive.

Our family's "Old Polish Chick" is 91 years old, and I love her so much. I just wanted to share a few memories I have with her. I am a better person from having her as my grandma.

Motherhood as I Know It

Ode to the empty armed mother,
Song to my wombless child,
Forever the gravesite watcher,
Sadness hits me like the tide.
I see his face in the trees,
I feel his life in the breeze,
Wish I could bottle his spirit,
His life I couldn't save in me. 

My son Gabriel, so long passed away, is ever a sadness and a blessing at the same time. I watch for him, almost like Rapunzel in the tower, only it is I who seeks his spirit, and wish I could send him that lifeline that was destroyed in my womb now twelve years ago. Such a glorious sadness, an unrequited love for something I wanted so much, yet the choice was not mine to make.

The exhaustion in my body after so many years of illness now knows that his passing was a three-fold result of fate. Had he been born, he would not have survived, nor, likely, would have I. And even if we both survived, we both would have faltered in the storm that has come these last twelve years.

A sadness and joy that is so difficult to describe, how one can feel them both simultaneously is a mystery I still can't solve. I seek him out in ever breath, in every moment. I know he's in me as much as my own soul is within me. Or I am within him. Perhaps my survival has been by nothing less than his life sacrificed, for my life survived.

No apologies for any sadness induced by your reading these words that help me heal and grow as I continue to cope with the loss of a child. Of actually two children, only the first was lost in those first weeks and became the "mole" in my partial molar pregnancy. Such things I did not know existed. I was told by a neonatologist around my third month that I had "a healthy baby growing in there". It wasn't until early in my sixth month that every maternal hope I had was dashed.

I am always processing this loss. Once a mother, always a mother. I know my baby boy lives on in me, as does he or she that left so, so soon. It was all ended way too soon. Mothers, hold your children close. Squeeze them an extra squeeze for me this weekend. I  know Gabriel would want it that way. Blessings to all on this coming Mother's Day.

The Goddess Within

In 2012, my parents' marriage ended after almost 39 years. It was heartbreaking to watch, not just as their daughter, but as an adult, understanding all the ramifications of a split of such magnitude and depth. As a woman, my search for the right man was largely based on the example my parents had set for my brother and I growing up. Their divorce blew everything I once believed in out of the water.  As time has gone on, I see both of them happier and healthier apart than together, and ultimately that is what I want for them.

 

I had been living with my parents for some time before their split due to my own health issues. I was too ill to live alone. My grandma had also been living with us, and I was able to provide any help she needed during the day while my parents were at work. It allowed us some quality time together. When they split, my grandma went to live with my aunt, and my mom and I stayed in the house. She and I have always been best friends, so being roommates was natural. For some, living with their mothers may sound like a nightmare. For me, it's a blast and a blessing!

 

Over the past three years, my mom and I have been there for each other during some tough times. The divorce wasn't easy for either of my parents. They signed their divorce papers one day short of their 39th wedding anniversary. Not even one week later, my mom's brother, Rusty, died of cancer. My mom was heartbroken but stoic. I was able to be there for my mom for what seemed like the first time in my life. She has always been a strong, dynamic female role model.  Even under the unbelievable stress and sadness of both losses, she found a way to carry on with amazing grace and humility. I kept waiting for her to break down, but she never did, and never has.

 

Yesterday I woke up, and my mom wasn't here. I texted her, and she said she'd be back in a bit. Not long after this, I'm sitting in the living room, and here come my mom carrying a tree up our front walk into our courtyard. Granted, it's not a HUGE tree, but it is, nonetheless, a tree. Our courtyard has almost an enchanted garden look to it. Lots of stones, angels, a few Buddha statues, lots of wind chimes, bird feeders; all in all it has a magical feel to it.

 

The one thing we've been missing is a red bud tree that once hung over the whole area. It was ruined in a storm several years ago. Since then, my mom has wanted to replace it. So yesterday, my mom went out and bought one, put it in her Camry and drove home with it coming out the sunroof. She is not a woman to be stopped when she has a vision. At first she was going to wait and have my brother plant it, but I convinced her we could do it.

 

So there we were, two women in flip-flops standing in the rain, me with my little shovel helping to break the tree out of it's container, and she with her big shovel digging a whole deep enough for the roots to have room to grow. The wind was blowing, the chimes were singing, and we're planting this living thing into the living earth. It was organic, cathartic and empowering.

 

I've never been one to garden, but yesterday it felt amazing to be part of this process with my mother and soul sister. Being out there, feeling the rain on my skin and the wind in my hair, it felt like nature was washing away some of the hurt from the past few years. Between the divorce and some of the darkest times of my life due to health issues, she and I have had our share of troubles, but we have survived.

 

She always picks herself up in the face of adversity and plows forward. She accepts her limitations, but she is always finding a new way to get things done when she can do it. She turns her worries into prayers and leaves the rest up to God. She loves unconditionally, and she gives her love generously to people, even when those people aren't acting all that lovable. I know that from personal experience. Most importantly, she loves herself, and witnessing that every day is perhaps the best lesson I have ever been given.

Yesterday evening, the wind was blowing, the chimes were singing, and my mom and I saw our fledgling tree standing straight and beautiful. I looked over at my mom, and I said, "You are teaching me to be the goddess every woman should know she is."

My mom turned from me to gaze back upon our beautiful courtyard and then turned back to look in my eyes, "Of everything I've taught you, THAT, to me is the most important. It is the most precious. I am so grateful to be setting that example for you."

EVERY woman is a goddess within.

Life's Stormy Shores

I preface this blog post by saying that there is not enough gratitude in the world that I have for all of you who have lived and supported and survived along with me. I know it can be hard to watch it, but to then have to read about it is a lot. I get it. I love you. On to my post....

I never expected to love writing for this blog like I have. It is a safe place for me to voice my inner thoughts, and my hope is that there are readers who hear their own inner voices echoed in my words. This is not meant as my sad story. It is challenging, trying at times, but it is a testament to my survival despite all these less than fortunate situations that have occurred over the past 16 years.  My words are those of a song of celebration for the sheer fact that I have come through so much! Things can always be worse.

I started this blog to sort of satisfy my aunt who thought writing one would give me good exposure and experience towards writing a book of my own. I have been writing said book for so long, and my life has fragmented in all these different life experiences and medical debacles that the book is now about 20 books, all incomplete. Her suggestion was a gift. This blog is a labor of love. I've made it my mission to make those dealing with chronic pain feel less alone, less afraid and less hopeless.

One of my biggest frustrations is the lack of response from my Facebook "family". For all of you who do regularly respond and make comments, you have no idea what joy it brings me. My former teachers especially, you give me GREAT feedback, and that only helps me grow. I know the sites aren't connected, so you have to go to the site to read the blog,  and then you have to go back to Facebook to hit "Like" or write a comment. I have gotten feedback from friends and family that they don't feel it's appropriate to "Like" something that is so sad or tragic, or that it makes them too sad to even read it. And perhaps, sometimes it's just a bit TOO honest (which I can appreciate.)

I see people who post something like, "OMG! That show was AMAZ! I just can't. It was just amaz." (this is not an actual quote. I just selected a few incomplete words that have been circulating, and I threw together a nonsense salad.) And what kills me is that they get double-digit "Likes" and comments. It feels like not being one of the popular kids in high school all over again. THIS, is MY problem. It's something I have to change in myself. What I truly need to focus on is connecting with the people who are dealing with similar issues and who need to feel understood, despite the pain and the craziness it has brought to their lives.  Please be clear, this post isn't a cry for more "Likes" or Comments on Facebook.

Going through all that I have only makes the small things in life all that much more precious. My request of you is that next time you see my blog post appear on Facebook, don't think of sadness. I'm just asking for a shift in your perception of me. Strength is not something we are granted. We have to endure some stormy days to earn it, and we've all been there in some way, shape or form. There is a secret I've learned over the years. God makes a great raincoat. Yes, I have suffered, but to do nothing with all I've learned from it would make my suffering be in vain. And that serves no one. That lets the negativity win, and my cup isn't just half full, it overflows.

Thank you for supporting me on this journey!

For the Love of Balloons

I grew up in a generation where those nice Mylar balloons filled with helium were decorations and gifts for all kinds of occasions and parties. In my home town of Bexley, OH, there was even a store dedicated to them, no other than long-but-not-forgotten Balloons on Occasion on Main Street. They offered a hundred designs and numerous shapes of balloons, and no doubt enough Mylar to keep a few dozen 7th graders speaking like The Chipmunks for an entire event. At any rate, the balloons were definitely my favorite cheer-up gift of choice, but I outgrew my balloon affinity around the same time that the store closed its doors.

Let me move on from middle school to my 20's. Any of you who have read some of my blog posts know that my health has been anything but pleasant. Early on in my disease, visitors would come see me in the hospital bearing balloons saying "Get Well" or "Keep Smiling". After awhile, I think people caught on that my health issues and the depression and desperation that have gone along with them required more than just a balloon. I always appreciated the gifts, but balloons seemed to go out of style just as my health did.

I think the helium-filled gifts stopped coming when people realized that things were WAY beyond balloons. Starting in 2010, I started noticing problems swallowing. Over the years, things got worse, and soon I started getting frequent cases of pneumonia. My lungs had been ravaged by the H1N1 virus in 2009, but it didn't explain my the numerous pneumonias. I finally had a very, VERY painful biopsy of my lungs. They found food in the tissue sample.

The next test was an upper endoscopy to look at my esophagus. As the doctor tried to move the scope down, he met resistance where my esophagus should have allowed passage. A balloon was used to dilate it, and my troubles with swallowing abated... for a month. I had to go back and have another one done. It remained open for a little more than three weeks. After the third balloon dilation couldn't keep the esophagus open, the doctor had to resort to surgery. And when my bowel was nicked in that surgery, I had to have emergency surgery the next day to fix that. That situation is a whole other blog post.

Anyway, this past Christmas, I got pneumonia, and with my history of esophageal stricture, another upper endoscopy was performed. Sure enough, there was resistance in the esophagus, and another balloon was used to dilate the it. I thought things were going OK until the last weeks of February. I wasn't even able to swallow water. It just came right back up. Imagine your esophagus is like the Panama Canal. The locks open and close as vessels pass through. In my body, the Panama Canal just remained closed after a few weeks of working normally. I required another balloon dilation in early March.

Again, the effects of the March balloon dilation only lasted a few weeks. I've spent the past few weeks trying everything, from a liquid diet to medication that would allow me some relief and some nourishment. Perhaps the worst day was the Wednesday before Easter. I had taken a bite of a mashed up baked potato. Immediately, I could feel the food scraping down my throat all the way down inside my chest even though it was a soft food. Suddenly, it felt like a iron fist was gripping the space between my breasts. The spasm it caused took my breath away. I was on my back, practicing Lamaze breathing for the next hour, trying to push through the pain. I thought it would never end.

Going through these kinds of health issues has made me realize the true brilliance of this glorious machine, also known as our bodies. Each part has a function, and when one part breaks down, the body and spirit falter. It's a sad truth that there many who don't recognize the brilliance of its design. It's easy to be angry when something goes wrong. The important thing is to be grateful for all the times it works just right. Every part of us is precious. I have learned true gratitude the hard way, but I am grateful nonetheless.

I haven't received a Mylar balloon for over a decade, but the balloon I received Thursday could be one of my greatest gifts. Although it is the same type I've received twice before in the past few months, I'm hoping this one truly keeps my Panama Canal open.  I hope the iron fist of those spasms stay away for good. Throughout it all, I'm thankful for the divine balance of my life, even when things feel upside down.

I remember being a child and the feeling of letting a helium balloon go and watching it climb and climb until it was out of sight. It a good analogy for my health. One day I was had it in my grasp, and the next it was so far gone, I could no longer see it. With the help of my amazing family and my incredible team of doctors, I feel like my balloon is floating back down to where I see it. With all the prayers I can muster in my heart, I hope one day to hold that string again and marvel at the extraordinary miracle of it all; the good, the bad and everything in between.

Easter In Me

As I sit overlooking the courtyard on this glorious spring day, I feel so fortunate to sit at this desk made of recycled wood and to listen to my son's and Nana's spirits singing to me through the music of our wind chimes. I am not a traditionally religious person, but rather a deeply spiritual one with influences from various religions. However, there is something sacred about Easter that calls to me, especially this year.

I was texting earlier with my dearest friend, who also has chronic pain, and I told him that I was just so tired of it all. Exhausted from the pain that possesses my body every day and all that goes with it. After 16 years, it seems rather normal that I would have these feelings. I'm a chronic pain veteran, but the war isn't over.

Every night I say my prayers. I thank God for all the pain has taught me and for the person I've become on account of it. Every morning, I wake, thanking God for getting me through another night. But in my heart, I can't help but wonder if I'll ever know a day without pain.

A few weeks ago, I met a new doctor in O.S.U.'s new pancreatic clinic.  I did not care for him... AT ALL.  I have plants with better bedside manners. He wore his prestigious title like a crown upon his head, and I was left choking on his arrogance. As I tried to summarize the last 16 years of pancreatic issues (which have created other GI issues and conditions), he kept interrupting me. I'd be recalling an intense flare of the pancreatitis, and he would ask, "Why do you THINK you had pancreatitis that time?"

Other than the medical tests, procedures, documentation that he held in my file, I was left with little to say. On the inside, my subconscious was staring annoyed at him, thinking, "Why do you think you're being a prick today? You may wear the crown in this clinic, but I wear the crown of this body with all it's imperfections, and I am not about to take your asshole antics."

Thank heaven's my subconscious has a condo in my brain and can't travel down to my voice box!

At any rate, we got through the appointment, and he said he was going to order all kinds of blood work, an MRI, and a test he called the "Gold Standard" at detecting pancreatitis. So now I refer to him as Dr. Gold Standard. It's a delightful oxymoron that befits him and entertains me.  He told me I would have all these things done in the month to come, and then we would reconvene in May to go over the findings.

I left frustrated, irritated, and generally lost. I had hoped for more from this man who is being raved about by his peers in the medical community. He was cold. I had to thaw as I left his office. I felt like he didn't believe I even had the condition, which baffled me. I've seen a renowned doctor at Indiana University's pancreatic clinic for 14 of the 16 years with this issue, and he never doubted it. He was the first doctor who diagnosed the problem to begin with.

Dr. Gold Standard's dubious attitude made me wonder if it could be true. That the pancreatitis wasn't the core problem. As I struggled with the idea, I was left wondering, "What the hell has been going on all these years after all?"

Since then, I've been getting emails, alerting me to test results that had been posted on O.S.U.'s awesome MyChart system, whereby patients can see certain test results, past hospitalizations, and even email doctors. My blood work was coming back, and there was one test that no doctor has EVER ordered, which is an indicator for an autoimmune disorder. I tested positive, so there is obviously more digging to do for answers.

Ironically enough, this past week my swallowing problem and the resulting pain has resurfaced, even though I just had my esophagus dilated by a balloon in early March. This problem has been plaguing me for years. In 2013, I had surgery to repair it, but my bowel was accidentally nicked. I became septic, and during emergency surgery, I lost 8 inches of my intestines and ended up with a  colostomy. I almost died.

Anyway,  I can't keep going as I am, but it would be my last case scenario to subject myself to that surgery again . So with these results coming in and this issue resurfacing AGAIN, I decided to do some digging. I researched autoimmune disorders, and there was one that described my swallowing issue to a T. While it scares me, I feel so blessed that there is this new possibility for a treatment or procedure that could make a positive difference in my health.

So to come full circle, I see this new doctor in a new light. Life's gifts don't always come in the packages we desire, but they are gifts nonetheless. Dr. Gold Standard's knowledge and range of expertise may lead me to a new, or at least brighter, start. And to me, that's what Easter is about. It's about rebirth and salvation. This man, with all his arrogance, may be on the way to saving me from the grasp of some of these symptoms.

One of the greatest challenges of chronic pain and illness is the isolation. It's the spirit within that wants so bad to do things that my body just won't allow right now. As I sit here with the sun shining upon my face and listening to the wind chimes, I am reminded that I am never isolated. God's unconditional love surrounds me at all times.

I can't help but wonder where life will lead me in the coming months, but I know the Divine won't leave me stranded. My faith tells me that these bumps in the road are meant to make me stronger. I may not ever have a pain-free day, but I may have a less painful day... someday. And for me, that would be bliss!

Happy Easter and Shalom!