Wednesday, December 10, 2014

Kneading Healing

In our complicated world with high stress and medical issues, there are only a few things that give me peace when I feel like hell. And that's exactly how I've felt the past few weeks as I've battled bronchitis. Not only did I get to spend Thanksgiving in the ER, but they gave me a steroid to "help my lungs". I'm truly unable to comprehend how athletes are capable of taking steroids and are then able to throw, hit and catch balls (other than their own), how they lift weights without crushing themselves with the dumbbell bars, how they run so fast and not have heart attacks right after they cross the finish line, etc. (you get my point.)

I happily accepted the steroids, as they were supposed to help. But after this steroid experience, I would sooner run around my neighborhood block naked than deal with the side effects that have gone along with what I can only call a messed the hell up experience. Yes, it has helped my bronchitis a bit, but the crazy side effects have been hell, such as anxiety, insomnia, crazy thinking, anger, fear, and those are the easy ones.

Allow me to paint you a picture:
I received my first dose of the steroid in the Emergency Room on Thanksgiving. That night my sleep was very disrupted. I woke up at 5am and all I could find on TV was Rocky IV. It was the part where Rocky was in Russia training, and they kept showing the Russian boxer using all these fancy machines, whereas Rocky is running with lumber on his back, he's working out in this old, rundown barn where he's doing pull ups. He's got  YO ADRIAN, her brother Pauly and his coach all in a wheelbarrow and was lifting them. Basically, he was training like a bad ass.

Anyway, that night (I had been up since 5 am), I was giving my mom a foot rub, and when she winced I told her what Rocky's coach kept telling him. "No pain. No pain. You feel no pain."

This resulted in a gaggle of giggles, the type that practically wrestle you into submission. I went on to relay the rest of the movie when Rocky starts winning, and even the Gorbachev character stood up and cheered for him. When the fight was over, Rocky got up and talked about our countries' potential for change, yada, yada, yada. My mom was still in stitches about my "No pain" speech. I don't know what moment made the floodgates open, but suddenly I was crying. She tried to talk to me, but I was in a torrent of tears. The mood swings have been unbelievable.

When my tears settled momentarily to a sniffle, I attempted to explain to my mom what had happened:

I told her that I had grown up during the Cold War, and that I remember it being known that Russia was our enemy. And I told her that in the second grade, we had an assignment to write a letter to someone famous.  I chose to write Gorbachev a letter, which I wanted to hand deliver, to sit on his lap and ask him to be friends with America. At that part I was sobbing. and I do mean sobbing, about the amazing transformation of our history.

These steroids really screwed with my mind, and my poor mother had to witness all of it!

Yesterday was the first day I didn't feel like Cybil on crack. I felt like just Cybil, but even.she has been quiet. Thank GOD, because she's dropped enough F-bombs along the way to sink a battleship. Instead, I'm withdrawing from the damn things, which is causing all kinds of symptoms that I need not share. I'm not enjoying it, but it's better than when I was ON the steroids.

When I was little, my Nana would make the best homemade noodles whenever I didn't feel well, emotionally or physically. I can still taste them. They weren't complicated at all, but there is a specific kind of unconditional love that must go in them. Since Nana's passing, my mom has been making the noodles. She puts her own kind of unconditional love and peace into them.  Not to mention, she always seemed to sense when I needed some noodle therapy, and soon you would find yourself with the best noodles in the world.

Yesterday, I was feeling so frustrated with all the crazy withdrawal side effects of the Prednisone (steroid), I decided to do something that would make me feel good. I was standing at the kitchen counter thinking about this, and my eyes meandered to the canisters in front of me full of flour and sugar. My brain started spinning. I went to the fridge and we did have eggs. Hhhmm.... I'm feeling yucky, and I could make some Nana Noodles!

I first need to disclose that I have NEVER made these noodles. So I started with the mound of flour and poured the egg into the middle. I started mixing it together with my fingers. It was gross. So I added a little more flour and another egg. I did more gooey mixing. I repeated last two steps. At this point, I had what looked like a bread loaf of dough. I started kneading the dough.

The feeling of it in between my fingers and the smell of the flour took me back to a time when I was standing on a chair and watching my Nana doing the same thing. It wasn't so much about being young. It was the security of being with my Nana. It was the feeling of sharing something special with her.

Back to my kitchen, I was kneading the dough with both hands, putting all the happiness and fond memories into my motions, when I suddenly felt as though my hands were entwined with an other's. I was reminded of the poem about the footprints  ("The years when you have seen only one set of footprints, my child, is when I carried you.")  As I kneaded that dough, it was as if my Nana's soft, porcelain hands were entwined with mine, and together we were making something I've associated with comfort and love my whole life. When it was time to roll out the dough, I felt her presence again. The whole thing (the mixing, rolling out, cutting noodles, drying noodles) was a rite of passage. I found it therapeutic and calming.

There are traditions in each family, but they will only remain as traditions if they are passed along to the next generation.  What effects they have on us is a mixed bag of emotions, although even the less positive ones can teach us great lessons. The most important thing I have learned (and continue to learn) is to stay educated on the treatment I've been given. I blindly took those steroids, and the next thing I know, my mom is staring at me as I cry over a letter to Gorbachev I wrote in the 2nd grade about the Cold War. It wasn't pretty, and it could have been prevented had I known more about the medication.

We have to be aware of every substance we put in our body, from benefits to side effects. The sacred vessels we've been given aren't returnable or exchangeable. I have no idea how long the withdrawal effects of these steroids will last, but I am praying that they will be gone soon. Until then, I just call on my angels, especially my Nana when I am kneading healing.

Friday, November 28, 2014

My Gratitude

Yesterday wasn't just Thanksgiving. It was also my nephew's birthday. I had intended to write and post our story yesterday, but unfortunately I spent the evening in the ER and wasn't able to go to his birthday party. Prior to going to the hospital, I slept through Thanksgiving dinner, which is usually what happens AFTER the turkey. It was a backwards day, but I realized this morning that it happened exactly how it was supposed to be. I'll explain.

When Ethan was born, I was recovering from my fourth surgery in sixth months, and the open incision in my abdomen had barely healed. I was in a dark place. I had hoped to be at his birth, but a recent ER trip made it unsafe. I was able to go see him, though. I remember it like a dream. I was wearing my Miami University sweatshirt and black sweatpants. I felt numb going in, until I saw him, and my heart opened up.

I can't remember if I was able to hold him or not. I want to say I didn't, because there was concern about exposing him to my ER germs. But it didn't matter. I was in a trance. I had never loved anything or anyone more than I loved him at that moment. Keith and Sonja had given ALL of us a precious gift! And our journey had just begun.

When Ethan was over, and it would be time for him to nap or go to bed, he would make this little moaning sound. A cross between a Yoga Ohm and the sound I imagine a baby calf makes. He would never just lay down and go to sleep. He had to move. So I would walk with him in my arms, and I would make the moaning sound back to him. And eventually he would fall asleep with his head against my heart. They would call me the "Baby Whisperer".

As he grew up and the moan was no longer happening, it took more to get him to fall to sleep. So I made up a little lullaby in Spanish. It was repetitive and I probably conjugated a verb or few wrong from lack of practice, but it became the song that made him sleep.  I would sing it over and over, and eventually he would fall asleep. It would almost always get him to stop crying. There was even a time when my parents and Keith and Sonja were taking Ethan to meet family in Louisville, KY, and in the car he just started crying uncontrollably. So they called me on the phone with the speaker on, and I sang it to him, and it quickly soothed him back to sleep.

I've referenced in past posts that my health has been pretty horrible for the past fifteen years. Several pretty significant health issues occurred in his early years, and the only thing that gave me the will to live was that little soul. He was my North Star. When I felt lost or like I couldn't take anymore, I thought of him, and it pulled me through. I imagined the feeling of him in my arms when his body would be against my chest, hearing my heartbeat, and me feeling his, and it was like this force greater than my illness.

I've always believed in God, and these words are not meant to say that the Divine hasn't had an enormous meaning in my life. But Ethan gave me something that made me want to live. I would tap into the force that had linked us from the time he was born, and I could feel it pulling me back home. I lost my own son when I was six months pregnant, and that pain never goes away. But from the time Ethan was born, I loved him as though he was my own.

When Ethan started talking, I desperately wanted him to call me "Tia", which is aunt in Spanish. I was a Spanish major in college, so I thought it would be fun. One day, he just looked at me and said, "YaYa". And that became my name. We were buddies. As he grew up and started talking more, each moment was an adventure. He was busy, always building, playing with trucks, playing outside in the mud, in the trees, in anything that fell in your typical boy activities.

When he started really talking, it was non-stop entertainment. At the same time, though, I swear he could feel my absence when I would go into the hospital. Keith would have Ethan call and leave me messages on my cell so I could listen to them when I was there. There is a story from when Ethan was a little over 2 years old. Keith and Sonja brought him over for a family dinner. After eating, everyone was visiting while my mom was doing the dishes, and she heard this little pounding. She followed it to my bedroom door, which was closed, where Ethan had brought a few toys. He was pounding on my door and yelling, "YaYa, YaYa! Come out with me!"

It broke my heart, but at the same time I took it as a symbol of how close we were. We were buddies. There have been times over the years where I felt like my best friend was that little monkey. It was pure love; no anger, no arguing, no fear. Just unconditional love. In truth, he always seemed (and at times still does) to think I was his age. When he was around four, he told me, "YaYa, when we grow up, we can either have a taco stand or drive a garbage truck." I've always leaned to the former, but who knows.

When my second nephew, Eli, came along, the brothers were linked from the word go. Ethan has always been protective of his little brother. As an infant, Eli would fuss as babies do, and Ethan would sing him the Spanish lullaby. He knew the words by heart.  When Eli started talking and no one could understand him, Ethan would ask him to repeat it, and Ethan would serve as a little translator. It was precious. The two of them remind of Tom Sawyer and Huck Finn. They are everything to me.

Last year, I missed Ethan's birthday because I was still so sick from my surgeries. I was dealing with some horrible side effects, so there was no way I could go. That's why I was SO excited to go to his birthday yesterday. I was having so much trouble breathing and wheezing that my doctor said to go to the ER. I was so heartbroken to miss it.

He talks to me a lot about me being sick, and he just doesn't understand why YaYa isn't fixed already. I give him the best positive answer that I can when I tell him I am slowly but surely getting better. I hope it works for him. I say it to myself, too. Sometimes I believe it, sometimes not. But I have so much to live for. Not everyone is blessed with love like this.

So actually, being in the ER was were I was meant to be. I got the help I needed. He was so busy with his gifts that I doubt he even noticed that I wasn't there. From my gurney in the ER, where the frustrations of my health issues were overwhelming me, I had a thought. I am meant to get better. I hear that two year old banging on my door, asking me to come out to play. I have to be well enough to be on the other side of that door going forward. I have to be there when my now 7 year old nephew comes knocking, because I'm his YaYa. I can't imagine a greater purpose than that, and I could not be more grateful.
Te quiero, mi sobrino, Te quiero, mi amor! Te quiro, mi sobrino, Te quiero, mi amor. Nunca sera un tiempo cuando que no te quiera!
Happy Birthday, Ethan! I love you more than moon and stars!

Tuesday, November 25, 2014

The Tightrope

As many of my readers know, I had major abdominal surgery in September. It was my fourth surgery in thirteen months, and needless to say, I was a wee bit nervous. Third only to my love and faith in the Divine, and the unconditional love of my family and friends was my trust in my amazing surgeon, Dr. Steven Steinberg.  He operated on me in 2010, and my surgery was very complicated, but he did an amazing job repairing a huge hernia; one that no other doctor wanted to touch.

After a dangerous bowel obstruction this summer, Dr. Steinberg went into my abdomen to see what was causing my issues. I went into surgery shaking, but I came out feeling at peace with the world. My mom even commented on it. I looked serene, even with over 40 staples in my abdomen. I could feel divine love and healing flowing through my body, healing all of the parts of me that had broken for so long. I had faith and I had hope, and God did the rest.

As I've continued to heal from my September surgery, I've noticed that not only is the surgical pain healing, but the pain that the surgery was meant to correct is healing, too. It's not gone, and in truth, I've been told I'll likely never be completely out of pain. I prayed and prayed to get through surgery without any crazy complications like last summer's surgical debacle, and I made it through. So I have been praying and praying for my pain to ease, and it has healed enough to go significantly down on my pain medications. It's precious to be in less pain! What a gift!

The process of reducing pain meds can be a long and arduous process, and it can make even the most chipper person feel gloomy. This week was a very dark one as I've started feeling the negative effects of a process that I'm ecstatic to be in a position to go through. If surgery hadn't helped, I would have needed more of these medicines that are a great help, but huge hindrance at the same time. They may free you from some of the pain, but you pay a price. It's a prison, in truth, making many things impossible.  So I suppose you could say I'm breaking out of prison with the guidance of my doctor. It's time for my version of "The Shawshank Redemption".

Withdrawal can be demoralizing. Some of the side-effects are depression, anxiety, insomnia, and those are some of the tolerable ones. This week I took a big step down on my dose of one of my pain medications, and I took a big emotional step into a ditch of depression. I was too nauseous to do much of anything. In my mind, I was walking a tightrope. If I fell to either side, it was a drop back into the day to day numbness that kept my world in a haze. The alternative is to focus on walking the line on this gradual healing. Life changes from one day to the next, and all I can do is put one foot in front of another. I'm on a voyage to clarity and liberation.

I feel like my capacity for joy has been infinitely increased by my capacity for hurt. I find radiance in simple things that others might find insignificant. Love is even better on this side of illness. I feel so much more of myself to share now that I don't have to focus everything into coping with pain. It isn't gone, but it is SO much better. That's worth a celebration. Hell, it's worth a parade! When I feel frustrated, I remember that feeling of peace I experienced right after surgery, and I know THIS TOO SHALL PASS!

Sunday, November 23, 2014

You Are My Sunshine

I've always been surrounded with love. I don't have any sisters, but I've been blessed with the most remarkable, sweet, ornery and loving brother. When I was around 5 years old, my mom's best friend since middle school and a friend from high school got married. When I was 7-ish, they had their first daughter, and a little sister was born. Angie was an angel in personality and appearance.

I still remember my first baby-sitting job was to sit and hold the bottle in Angie's mouth who was sitting in her little baby seat while her mom mowed the front lawn. I remember how it felt, what an honor it was to be trusted to hold the bottle in her perfectly pursed lips. I loved her so much (and still do!) Watching her here or there (under supervision) taught me to do what I always wanted to be someday. I was like a little mother, as my Nana would call me.

Not too many years later, her precious and spunky sister was born. Becky was feisty from the word go. By the time she was born, I was old enough to baby-sit (at least in those days.) In her early years, she couldn't say my name, and "Jessica" became "Gah-kah" (phonetically speaking.) As they grew up,  we would have "giggle parties", and "dance parties". I haven't had the occasion to see either of them dance, but if they suck at it, then it is ENTIRELY my fault. For whatever reason, back then they saw me as some sort of dance messiah, and I am riddled with the occasional worry that I may have stunted their dance growth. God willing, they've both had interventions and don't move like I did. We almost always had fun. They were a joy to watch!

When I went off to college (and it's still a mystery why their parents allowed this), their mom, Kathy, drove them to Oxford for Miami's little sibs' weekend. My brother was in high school and wasn't into it, so I had my two "sisters" and one of their friends come in for the weekend. God bless my roommate, because all five of us stayed in our dorm room. Becky was still young enough to give piggy-back rides, and there were always fun activities going on.  It was a precious experience filled with laughter and chatter, and they were all still in one piece when they were picked up. I think they came back my sophomore year (I'm too old to remember for sure.)

Our families have grown up together. They've seen me at about every stage of this fifteen year old illness, and I even missed Angie's wedding because of it. But I was there with her, even though in person, I wasn't. I've seen Angie's little boy over the years, and I see qualities of her at that age. I saw Becky get married, and she was a lovely bride. She and her husband moved to California for several years, and I loved hearing about what she was doing. I remembered when I moved to D.C. at about the same age, and how great it felt to get out of Ohio.

They are family.

It's been a rough week. Surgery helped my pain quite a bit, and I'm gratefully going down on some of my pain meds. The side effects are less than fun. To name just a few symptoms, there's the suck-your-soul-out depression, the infuriating insomnia coupled with atrotious anxiety. It's not quite a good time.

Yesterday, I just needed to get out of the house. My mom and I were just starting our voyage through the fruit and vegetable area at the grocery, when I see this glowing face and two big brown eyes that used to look right through to my soul when I would hold her bottle. It was Angie, all coordinated with a cute scarf and purse and coat.... all grown up. She came over and gave me a huge hug, which gave my soul one, too. We talked about her job, her little boy, which brought tears of joys to her eyes. She was a dynamic, beaming ray of light that lifted me right out of my funk. My little sister.

Who knew I could find so much sunshine in Kroger...

Saturday, November 8, 2014

The Times I've Wished Away

There is a pattern I have begun to realize in myself that needs some work. Year after year of dealing with condition after condition, I have developed a habit to get me through whatever has plagued me at any given time. Each time I've been knocked down, I've prayed for the strength to get to a better place, physically, emotionally or spiritually (or all three.) I have found myself wishing away time, hoping that somewhere in the future, I would find myself feeling better. Then that time would come, and something else would happen. And once again, I would find myself wishing away time, hoping that sometime in the not so far future, I would find myself with less stress, less illness, less hopelessness; less whatever challenge was standing before me. 

While I realize that such thoughts are, in truth, very human, I have begun to look back at the overall fifteen years of illness and pain and wonder how many precious moments I have missed along the way, because I've been too busy wishing away time for something better. Perhaps if my health were more predictable, I wouldn't find myself doing this so often. I wouldn't be plagued by SO many episodes that hurt SO much. I wouldn't feel tortured by a pain that has had me on my knees, praying for it to pass.

However, my health issues have consistently put me in these situations, from hospitalizations, surgeries or long periods of pain. And whether it is normal or not, I've tossed many pennies into the proverbial wishing well with hope for the pain to stop, for healing to start and for time to pass so that I can start my life anew. I've spent so much of my life waiting for that moment when all the planets are perfectly aligned that I've missed more than my share of shooting stars on a long walk awaiting a perfect life that will never be.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                               
There are no perfect moments awaiting our arrival, but rather there are many moments awaiting our minds' and hearts' desire and ability to make them as perfect and precious as we can.  Moments don't have to be perfect to be precious. I can't beat myself up for all the times I've wished away, but I can go forward and learn to see the positive things that surround me even if I am in the hospital or in pain.  I can be grateful that the past year of 4 surgeries, a colostomy, and a lot of pain is behind me. And when I flip that coin, it is only after going through this past year that has made even the most simple moments feel magical.

Whether we notice it or not, time races by. It certainly doesn't need any help to do that. So I will keep those wishes to myself, and allow it to pass by on its own. I'm just so grateful to be along for the ride!

Friday, October 31, 2014

Healing, Part 2

While I love this time of year and enjoy seeing my nephews in their costumes, Halloween haunts me in a way I can't escape. It represents an incident I wish I could forget, but I've not been successful.  I've built such a high wall around it that I've found it impossible to recover from. Like a festering wound, it has lived inside far too long. Telling this story will hopefully rid my soul of some of the poison.

There are things we must first let go in order to make room in our souls for positive, healing energy. I've been haunted by a Halloween from long ago.  The shame and guilt are so heavy it is sometimes hard to move. I laughed in God's face when I inadvertently, but absolutely pushed the envelope of life too far.  I was trying to flee from the pain, not from life. But the outcome was the same, and I have carried the guilt ever since.

It was Halloween 2003, and I was reeling from the loss of my son in my sixth month of pregnancy earlier that year, which was followed by the death of my Nana not even five months later. Losing a child and my spiritual touchstone in such a short time had me overwhelmed with grief. The heartache was bad enough, but tag on the anguish from the physical pain of my disease, and that's where you would find me, barely able to scrape my spirit up off the floor just to go through the motions of real life.

I left work early that day, because my pancreatic pain was giving me fits. I had been experiencing panic attacks and severe depression since losing my son (on top of a bad pancreatic flare), so on the way home I picked up my prescriptions for Xanex and Morphine. I went home and took the appropriate doses, but the panic, pain and depression weren't touched. I remember taking a second dose about a half hour later. And then another dose of both yet another half hour later.  I wasn't trying to end my life, I just wanted the pain to end. When the tears came that day, as they did every day, I remember crying from a place so deep within me, it felt like my heart might truly break. I couldn't take it. So I kept taking the pills, thinking that one more might make a difference.

By some miracle, my mom came home early that day and found me. What went on from there is lost in a memory I can't access. The next thing I recall was waking up briefly in the Emergency Room as charcoal was being pumped into my stomach. There was a doctor who asked me if I meant to hurt myself, and I remember nodding yes, even though it wasn't true. It was hard to communicate anything with a hose down my throat. I vaguely remember being a patient in the Mt. Carmel East observation unit, calling way too many people and saying way too much. I think my mom finally told them to take my phone away. What must have been a day or two later, I realized I was a patient in the psych ward of Mt. Carmel West.
How had I gotten there? I didn't want to die! I just wanted the pain to go away, mentally and physically.  Once I was released from the psyche ward, I returned home full of questions. How much had I taken? How many people knew? I was overwhelmed with guilt and shame.  The ordeal I had put my family through was unforgivable in my eyes. I was afraid to ask what happened in the hours I could no longer recall. My brother Keith was the only one I felt comfortable asking. I thought he would be honest.  As he started filling in the blanks, I became more and more aware of how far I had truly come to the verge of death.

When it all happened, my brother had counted my pills, figuring out how much I had taken in the span of about seven hours of time. The grand tally was: 40 Xanex, 50 Morphine. That's how much I had taken, and yet I'm still here to tell this story.  God has spoken to me via various life events, but this one ranks pretty high. I could easily have died from this unintentional overdose, but I hadn't. Someone thought I should be here, and I've been grateful ever since.                            
 The memory of that Halloween has haunted my memory for eleven years.  It was undeniably a defining event in my life, yet it goes against everything I have become.  Like a festering wound, it became glaringly clear to me in this past year that the story needed to be told so that I could finally be free of it.  I've never wanted to embrace life more, to enjoy the precious moments that happen in the blink of an eye.  This Halloween is about healing, especially about healing from old mistakes. In the grand scheme of things, my soul needs as much room as possible for positive, loving, healing energy.

I've apologized to my family for all this put them through, but I'll probably always feel some guilt about the scariest Halloween any of us ever experienced.  Somehow by sharing this, the shame is slipping away. Surely someone else out there in chronic pain can understand this, too. There may even be some who have gone through a similar experience. I chose to write this story as much for those who can relate as for myself. We all have times of weakness.  We all makes mistakes. That's what make us human, after all.

Wednesday, October 29, 2014

Healing, Part I

This time of year as darkness comes earlier and the shadows move through leaves that are constantly changing shades, I am reminded of the start of my disease. It is my favorite time of year because of the beautiful changes that occur, but the pain was not one of them. It invaded like an atomic bomb, and suddenly I didn't recognize my life. With every year, the pain intensified, and I didn't know how to survive. I woke up terrified of every hour and the pain it held. I would hope that the next hour would be better and would count the minutes until it's arrival, yet when it would arrive, the pain would be just as severe   Nothing could take it away, but I tried. Oh, how I tried. And how I failed.

There are two parts to healing from chronic illness. There is the strength it takes to propel yourself forward into a productive and purposeful life . And there is the strength it takes to forget and free yourself of all the shame, guilt, isolation and worthlessness you carried on your back up to this point. I can't explain why I've felt ashamed of and guilty for my disease, but I have. Those are common sentiments among individuals with chronic illness, not that it makes it any easier. In the past fifteen years, I can truly say this is the first time I don't feel shackled to those negative emotions. 

I don't believe there are more than a handful of people who know just how isolated I've been from the world, truly isolated. At the hospital, nurses and doctors alike make comments about how I don't look my age; that I look like a woman in my mid-20's rather than my late 30's. When you don't leave the house except to go to the doctor, your skin does benefit, but your spirit withers. And that's how I've felt. Like a withered flower who hasn't known HOW to be out in the world. And for many years, that hasn't mattered, because I've been too sick to do anything other than stay in bed. But I'm starting to blossom, from the inside.

Hope is a great source of life. It is to the spirit what the sun is to nature. It makes it come to life, makes it shine like a brilliant star. There is a light I feel from within that hasn't been there in fifteen years. I feel like I'm glowing. It's as though I'm coming back to life, physically, emotionally and spiritually. I am starting to feel well enough, and safe enough, to get out and about, to interact, to be ALIVE rather than just surviving. It's time to get out of my bubbleworld, even if it means that I will start looking my age. I've pulled the cord on the propeller, and I'm praying for a divine compass to show me what I'm meant to do and where I'm meant to go. But that's just part one of my healing. Going forward may prove easier than healing backwards. But I'm ready to try.

Thursday, October 16, 2014

Ice Age

It was around this time of year in 1999 when the first whisperings of disease descended upon my life. I had only been in Washington, D.C. for about a year since moving there after college graduation. My boyfriend at the time and I had just settled into a precious Cape Cod rental house in Alexandria, VA. Between my man, my home, my job and my dog, I felt like a woman of the world, ready to make her mark.

When the pain came, it was like a full eclipse of the sun. My future was paralyzed. Hell, my present was paralyzed.  And that was before things got really bad; before pain, pain doctors and pain pills wrapped around me like vine on a trellis. Necessary evils in the face of a merciless disease.  It was a situational straight jacket.

Who knew life could change so quickly, absolutely, and inescapably? The hopeful 23-year old woman who was looking forward to a career and family was put on ice. I was very sick, and the life I had always dreamt of was the casualty. I came home to Columbus where family could care for me, and here I have remained. I fell into a long, dark night.

Every year when the air turns crisp and the leaves turn shades of crimson and gold, I can hear her voice calling on the wind. There hasn't been an ongoing career, a husband or a home of my own. And the only child I had died inside me. Never in a million years did that hopeful 23 year old young woman think that her battle was just beginning, nor think that it would endure 15 years and counting. Her voice sounds almost like a child longing to be fed. And I so wish I could feed her, but the milk she craves has long dried out. 

This fall is unfolding differently. There is a new voice I hear. It comes from within. The song is full of hope; hope for health and love. The pride and faith I've found as I've battled these wounds merge to form a sweet, yet strong melody. It rides on the wind and sings in the chimes that surround my home. I would be lying to say there aren't days I didn't wish I could start over with my youth and health intact, but I believe that makes me human.

When I think I want her back, I tell myself to look at my soul in a mirror. I am proud of what l I see. I am strong to have survived what I have. Getting sick sure as hell wasn't my choice, no matter how many doctors tried to tell me it was in my head before they figured it out. But I DID choose to survive it. I chose to remain hopeful, and that's no small feat. That young Jessica is gone, but a stronger, prouder, braver Jessica is in her place.

The disease and pain have put me through an ice age. Every part of the illness has carved into me like glaciers eroding rock to form what are now mountain ranges. True, much of the old me has been weathered away. But how can I deny the blessings I've been gifted. I've got mountain ranges ahead of me. Beautiful, glorious, living mountain ranges with infinite possibilities. I'm more than happy with that.

Monday, October 6, 2014

A Taste of Life

Of all the unique qualities I have, I believe my taste for a random substance may be my most bizarre traits. I rarely think of it except for when I need to go to the Emergency Room. This past Saturday, my blessed body was dehydrated and needing an IV, so to the ER I went. After 15 years with my pancreatic condition, my veins are shot. My skin has toughened, my veins have scarred over and are tiny and curvy, making it very hard to thread an IV catheter. 

It's gotten so bad that there is a note in my chart from my primary physician saying that the Doppler must be used to place my IVs.  Even so, most nurses insist on trying to place one without the Doppler first. Who am I to irritate my nurse by requesting she fetch a machine to do something she spent her training and nursing career perfecting?  Especially when she is the one in charge of hanging my saline and administering your meds. She is not a lady to piss off!

Per usual, my dehydration made Saturday's IV placement more difficult. The nurse claimed she didn't know where the Doppler was. So she tried on my right arm, and the vein rolled. She went to my other arm and looked up and down my pin-dotted, scarred skin. By looks alone, I probably look like I've been shooting heroin up and down my arms. The nurse found a deep vein, and she told me to prepare for a big stick.

Here is a side-bar of sorts: I have had IVs placed in my neck, in my inner thigh, in my feet. There is no pleasant IV stick. I learned early on that making noise and moving around only prolongs the procedure. I've taught myself to close myself off from the environment around me, and I elevate my soul up above the pain. I find a safe nook on the ceiling where my angels flutter in place and look over me. When you take your mind away from the pain, it can no longer hurt you. It's just a physical hiccup. It's over soon enough.

I could hear the snap of the IV needle and catheter disconnecting. The nurse flushed the IV with saline. Here is my magical moment, one that I doubt many, if any, share with me, but it deserves gratitude for sure. I can taste the saline in my mouth, and that is the precious sign that my body is going to get the fluids. Whichever parent I have with me always laughs at the moment I can taste it, because they can see the relief and joy on my face. I told my nurse how much I love the taste of saline, and like most I have told, she said she'd never heard that and that it's pretty odd. And it is, for a reason.

This is my routine explanation of WHY I love the taste of saline:
We all have different paths in life. If you are a chef, you probably love the smell of even the most exotic spices and can pick them out with one whiff. If you are a swimmer, you probably love the smell of chlorine. If you are a fisherman, you probably love the smell of the water upon which your boat dances. Much of my life over the past fifteen years has taken place in the hospital. That's been my journey. My body is my vessel and when it is low on fluids, it can't do anything right. So while it may be weird, tasting saline is a sign that I'm on my way back to life.

I can't think of anything better than that.

Wednesday, October 1, 2014

Tree Hugger

When someone has undergone as many surgeries as I have over my lifetime, it's difficult not to look in the mirror and see the resulting scars as imperfections in what used to be a smooth surface.  The idea of anyone seeing my scars, whether it's from wearing a bathing suit that doesn't cover them all or while in the arms of a lover, is enough to cause some insecurities.

I had my first major surgery at 13, during which part of my right kidney was removed. That was before the days of widespread use of laparoscopic techniques rather than open incisions. Instead of a few tiny incisions, I was cut from my back, around my side to my front right side. I recall the first question I asked my surgeon the first day he made rounds.

 "Why didn't you spare yourself some time and effort, and just use a sword?" And to think, those were the days BEFORE my feistiness was flourishing.

Fortunately, I was blessed with several long-term relationships over the years. As I continued to need an operation here, another one there, I started to feel like a tree that had been carved out. When I looked in the mirror, I saw flaws. At that point it was around 2001, and I was still well enough that I was dating and in a few short relationships. I was always self-conscious.

And then 2006 hit, and between then and now, I can't mentally trace my surgical voyage. It's a blur. My body's scars certainly told a tale of medical hardship, but there is unfortunately no timeline carved anywhere. 2006 was the beginning of my unintentional but absolute celibacy. I was too sick, too exhausted and too isolated to even imagine a relationship. It was a lonely but medically active time.

In the last year I have truly started to feel that yearning to get back into the dating scene. Just because I've been faced with my share of medical adversity doesn't make me a sick person. I am not defined by the conditions I have. They are parts of my life, but they are NOT my life. Especially with this most recent surgery, I have hopes for greater healing. My amazing surgeon has remedied issues that were a nightmare to endure. Now the only hindrance is my comfort level with my scar and it's most recent growth.

While I certainly feel modest about it being seen, I am probably more insecure about my weight than I am about my scar. After everything, my carved out tree may not be the prettiest thing, but it sure does carry with it a fair amount of grit and character. A bikini may not flatter me now, but I am proud of my scar and all the bravery and strength it represents. And whoever I am lucky enough to find as a mate will be just as lucky to find me. He'll be more than blessed to hug this tree.

Friday, September 26, 2014

The Day that Hope Woke

Two weeks ago today, I went into major surgery under the care of hope-to-the-hopeless-physician, Dr. Steven Steinberg. When I woke up, I felt hope around and inside me. I remember looking at my mom and beaming peace. It was coming out of every pore. I could feel it almost like electricity running though my veins. I was still in and out of consciousness, but I was certain of one thing. September 12, 2014 was the day that my hope woke up.

I looked into my mind's eye and saw something that I haven't seen in a long time; a silver lining. With every day that passes, my faith in a future of less pain is validated yet foreign. I'm almost afraid to believe, lest I jinx it not to occur. In the past, the pattern has been one step forward, two steps back. However,  in my heart, I feel like maybe now it's OK to believe. It's time to put that pattern behind me. After all, Hope is awake now.

Tuesday, September 23, 2014

No Small Miracles

Ten days ago, I had my 4th major abdominal surgery in just over a year. After last summer's surgical debacle, it was hard to have faith that everything would be OK. But faith I had that morning, if for no other reason than to avoid poisoning an already dangerous situation with negative thoughts. Ironically enough, I received an outside reason to have faith when I reached the surgical floor.

I recently had an angel card reading. One of the many things the angel medium said was that the number five would be important in my life. It had given me goose-bumps, because my lucky number is five. Perhaps that sounds minor to many of you, but when I reached the surgical floor and had to put one of those sexy blue surgical caps, my file was laid upon my abdomen. I looked down to see "Operating Rm 5" circled. That's when my faith was validated by the Universe.

I remember very little after that. I entrusted my body to the surgeon, my soul to God, and I took a deep, drugged nap. My first memory post-op was of my mother's soft voice, her loving hand stroking my cheek, saying, "He found it and fixed it, Jessica! It's all going to be better now."

Another thing I was told by the angel medium was that there would soon be a miracle in my life. She did not mention what kind of miracle it would be, ie. health, family, money, etc. The fact that the surgeon opened me up, found the culprit of my pain and was able to fix all in one swoop is a miracle if I've ever heard one.

None of us are guaranteed a life of health. When we have one, we should be grateful for it. And when we struggle with our health, for no matter how long, we should embrace every moment of wellness we are given. And when a marriage of divinity and medicine are able to repair what is broken inside, nothing short of eternal gratitude will do.

~Oh what wondrous dreams we weave when we allow ourselves to believe! ~  Me

Thursday, September 18, 2014

Changing Jobs

It has been almost a decade since I was able to work due to my health. While I would love to return to the workplace someday, I've realized how far away I am from those currently seeking jobs.

Most everyone has a skill set, whether or not they get paid and receive benefits for them. Some compete to work in the coolest environments, some to apply their skills, and some, yet, who merely want great offices with the best views. Of course, money speaks volumes regardless of the career.  Even with my BA in Spanish, a good job history and decent skill test, the thing I am sadly best at is being a patient.

This is one of those jobs where, despite the view I have (right now I'm looking down at the Horseshoe), I wish I could be somewhere else. I've done it longer than any other job, I do it better and calmer than the general population, and I've got plenty of scars on my breathing resume to prove my experience. Just like my peers work to earn money, I must spend time in the hospital to earn health. In either situation, it's a matter of survival.

Over the past fifteen years, I've learned to drink contrast without gagging, I've had tubes stuffed up my nose, down my throat, up my bum and been x-rayed and CT scanned so many times that I can probably be seen from planets that have yet to be identified. I can be poked over and over for an IV without screaming or moving, despite the pain.  In fact, I've developed a method whereby I can meditate out of my body, away from the pain and hover there while IVs are placed. I'm waiting for the patent.

More than anything, I know how to play the hospital game. I know that when you're in the most pain, you either won't be due for medicine, the medicine ordered is something you're allergic to despite the fact that you have submitted your allergy list multiple times, or the doctor hasn't ordered anything (even though he told you he would.)  Or a nurse is looking over your med list and begins to tell in a shaming way how awful it is that you're on so much medication! You're stuck in your bed, feeling like an ant with the Wicked Hoe of the Hospital standing over you with evil eyes that pierce your soul.

It can be any combination of unfortunate happenings, but when you're in the hospital for more than two or three days, the hospital literally sucks the life right after you. No matter how nice most of the staff is, it is almost impossible to be in the hospital without getting mind-sucked into the Bermuda Triangle of hospital b.s. This is why I hope to get better so I can get out of this line of work.

I have been affirming my love and gratitude for my body, and making sure God realizes how grateful I am to have come through such a complex surgery. At the rate I'm going, I'm praying the winds blow me in a new direction very soon. Then the world will see the woman who is ready for a new journey. 

Friday, September 12, 2014

Best Laid Plans

I know there is a saying "When people plan, God laughs", and he has been laughing this week as I've tried to keep up with my plans to write a post everyday about a different coping skill in preparation for today's surgery. That didn't work out so well. Alas, it is now the morning of surgery, and I'm a wee bit nervous, and I don't think any amount of planning could have kept me from this natural fear of being cut open. So instead of hearing my controlled emotions each day, you instead get to hear my sarcasm the morning of surgery.

The last time I was hospitalized, I came across the show "Naked and Alone". At first I was a bit mortified by the show, but now I'm a fan. And while watching a rerun yesterday, I realized while the show entertains me so. The name of the show could very well describe the day of surgery. You are made to get naked, you go into a room full of spectators and are stripped of your dignity, and by the end of your hospital adventure, you smell and are it great need of a shower and a good meal. My fascination with show all makes sense.

So it's o-dark-thirty, and I am expected to take my second shower in 5 hours with this heavy-duty soap that could easily wash my skin away if done too many times, no less the germs it's supposedly meant to wash off. Yesterday, showering with antibacterial soap was my cardio. At this point, I hope you can taste my sarcasm, as it's about all that's left as I prepare for today's major operation.  Fortunately, I'm my surgeon's first case of the day, so hopefully he hasn't had the chance to get drunk, and its not so late that he's falling asleep. Thank God for every blessing!

I'm trying to figure out how NOT to be scared knowing that I'm going to wake up with about forty staples running down my abdomen, almost like a zipper. God willing, there will be no infection or complication. I've had my fill of problematic surgery for the year. I would be truly grateful for every prayer, no sarcasm. My humor is my armor, but underneath I'm just a woman who has been sick for a long time, and whose greatest wish is to come out of this operation with a little less pain in the future.

My blog gives me such joy, and your comments and emails mean so much! I am grateful for every wish for wellness, and every prayer! This past week or so, the blog has been a little less active between my vacation and pre-op appointments. I hope to come through surgery stronger than ever! May all of you be well until I return.

Monday, September 8, 2014

First: Acceptance

On Friday, I will have my fourth major surgery in just over the course of a year.  The first one occurred on July 30, 2013 when my exceptionally tight esophagus was repaired. Unfortunately, my bowel was nicked during the surgery, and I went in to septic shock. The next day I had to have emergency surgery to repair what damage was done from sepsis, 8 inches of my colon was removed, and I ended up with a colostomy for six months. I spent 6 days in the SICU afterwards, battling ICU Delirium. It was a very traumatic and life-altering experience. I am so fortunate to have survived!

That surgical experience left me TERRIFIED when it came time to reverse my colostomy. It had been six months of hell with my dysfunctional (the word the surgeon used) colostomy, and I wanted it reversed more than anything!,  However, after all that went wrong last summer, I worked myself into a frenzy of stress and fear about going under the knife again. Trusting a surgeon with my body again was tough.

I think that, as a culture, we invest our trust in our doctors as if they are demigods. I know that personally, I sign those "Medical Consent" documents like I'm signing for a UPS package. When you live through one of the SEVERE, potential near-death complications listed on your Surgical Consent sheet, you start to think more seriously about what it is to which you are consenting. Our bodies are sacred gifts, and we should take time and thought before letting anyone cut into them. Were it not for my past positive experience with my current surgeon, I wouldn't be going through with this. 

My terror was already seeping out when my mom, nephew and I went to Colorado last week to visit family. We had a lovely week, but there was a specific experience that has truly changed my way of thinking. I had energy work with a Shaman, and his wife gave me an angel reading. If you don't believe, allow yourself a chuckle and stop reading. If you feel like such things COULD exist, it's worth seeking out. This woman sat me down, and the cards I picked and the things she told me blew my mind. Tiny details nobody knows came out of her mouth. It was incredible.

I can't even describe the peace and inquisitiveness the reading brought out of me. It was like little drips of water on a parched tongue, and I want more water. It was a chiropractic adjustment of my spirit. I can't say all my fear is gone, but I feel my angels are watching over me. From this reading, I have adopted a different attitude. Rather than freaking out about this upcoming experience, I have instead reached within, using the tools that were validated in the reading and come up within several ideals to explore and adopt before surgery. They are intended to motivate yet soothe me in this voyage to the 12th.

Today's practice  is acceptance. It has been almost four weeks since I saw the surgeon, and it was decided that surgery had a good potential of helping my pain, There were no promises made, but he thought there would be a reasonable chance in relieving me. Since that appointment, it has felt as though each moment has crawled on; the idea of pain relief has seemed so far away. When every moment is saturated with pain, it is almost impossible to think about anything but relieving it.

Now that it has arrived, it's the acceptance that I will have to endure pain to heal. There may be tears before there is laughter. And I keep telling myself that I will be surrounded by my angels no matter how long I'm on this healing path.  I can see in my mind's eye good times ahead. I ACCEPT that they will happen. My heart can feel the pain leaving my life, and I accept that I deserve it!

Thursday, August 28, 2014

Living Through the Pain

My pain has been stubborn lately, making even the simplest trip to the grocery store or a quick Swiffer over the floor rather tedious. I believe in listening to my body, and I usually do. But sometimes, I push the envelope and live my life as I would anyway. If I refrained from doing what I have planned anytime and every time I felt sick, I would never do anything. And THAT isn't life to me.

I believe this is one of the greatest challenges for anyone with chronic pain. It's finding a happy medium between agony and the general population's normalcy. It's finding a pace that is normal for YOU. And it's the ability to feel at peace with the normalcy you find. As part of the irrational yet absolute guilt I feel for not keeping up with "normal",  it is very hard for me not to apologize for the gap between my normalcy and the normalcy of those who aren't dealing with my health issues. It may sound ridiculous to most, but there is shame associated with the shortcomings brought on by chronic pain.

If I didn't help around the house, go shopping, socialize, etc whenever I feel sick,  I would feel such a sense of failure that, combined with the dishonor I already feel just for BEING ill, I would end up catatonic with disappointment, sadness, and guilt. Guilt for having a life that many would kill for, literally. A life with limbs that move on their own. A heart that beats, eyes that can see, organs that work (at least for the most part.) My body and all its functions are miracles, a recipe for a wonderful life. I am SO blessed, despite my setbacks.

I can't recall the last day I woke up and had no pain. Nor can I recall a day when that pain didn't endure most, if not every hour. The same goes for nausea. I have medications that help those symptoms, but they don't take them totally away. I have no desire to be dependent on medications forever, but for now they are what's getting me by. My hopes are that the upcoming surgery I'm having will greatly help my pain, and I can go from there once I've healed from the operation.

Long before these illnesses came along, I was in therapy for an eating disorder, and we were discussing how I felt that my disorder had set me back on my life's path. My therapist said that life is not a linear journey. We don't start at the same place and move forward. Instead, life is like a spider web; it branches out with each journey, and the web changes. And much like snowflakes, our spider webs are all unique.

This outlook really helped me, because thinking of my life on a linear path leaves me feeling really behind, as though I'm failing. Thinking of the web gives me the feeling that there is hope. My web is still in progress, just not the same way anyone else's is. If I answered to my pain every moment of every day, I would essentially be a statue. I wouldn't move, I wouldn't do anything. So the "normal" I've found is somewhere in between being immobile and dusting tables while standing on my head. It all depends on the day. I'm simply spinning my web set to the music my body plays and trying to be proud.

Tuesday, August 26, 2014

Living History

There was a very happy soul in the Universe Sunday night. She was smiling down by the light of the summer moon. Her womb hadn't been full for almost sixty years, but there was a pulse of the lives that started from within her mother spirit all those years ago that echoed off the stars. Sunday evening she felt pride that after all the ups and downs of life, her babies still reunite and celebrate the connection they share, which includes sharing their children, and sharing their children's children. What greater affirmation is there for a life well-lived and love-filled than that family chain continuing to enjoy each other's company long after your mother-self has left the Earth?!

I've written about my Nana before, and I feel her presence with me at all times, but Sunday was special. Of her three children, my mom and Uncle Denny are the two still living. My beloved Uncle Rusty passed from cancer two years ago. My mom, nephew and I are traveling to Colorado next week to see his family, and we're beyond excited! On Sunday, my mom and I had a dinner at our home as a reunion of sorts. Denny and my Aunt Vicky's daughter and granddaughter, Nicole and Cassidy, were visiting from Idaho. They all came, and my brother, Keith, Sonja and my nephews came for a nice dinner. The great surprise of the night was that Denny and Vicky's son, Jim, his wife, Lisa, and their daughter, Sidney, and twins Jade and Marcus were able to come at the last minute. With the exception of my Uncle Rusty's family in Colorado, all of Nana's family was together!

As I watched the evening unfold, I watched grandchildren parent her great-grandchildren. I imagined the way she would interact with each great-grandchild if she could have been there. I looked around the dinner table and imagined I was looking through her eyes, watching all the great-grandchildren who ranged from twin toddlers to two three-year olds (one boy, one girl), and a six year old boy. Then there was the honorary guest, fourteen-year old Cassidy, who was the one great-grandchild who Nana had the pleasure of holding in her arms. My mom was able to find pictures of both Nana and I holding Cassidy as an infant, and it was so special watching Cassidy look at them and seeing her smile when she found out they were hers to keep. She was too young to remember the occasion, but it was sweet to watch the picture show her how beloved she was (and still is.)

Nana and I shared a very close relationship. I was the first grandchild of six, and she and I shared in our unique spirituality/religion, our love of writing, to state just a few common traits. Perhaps the oddest thing for me about Sunday's dinner was that of the four grandchildren present, I was the only one without a child of my own. It made me sad, but ultimately I know that the reason my child wasn't there was because my son is already with her. I lost Gabriel just five short months before Nana died. Perhaps the greatest comfort I have with Gabriel's passing is knowing that Nana is with him every day, nurturing and loving him in ways that gives my heart peace.

Sunday's dinner was Nana's legacy alive and thriving. Every tiny footstep of a great-grandchild held at least part of her spirit in a pitter of the pitter-patter. It was a lovely reunion of a people whose lives may all go in different directions, but there is still an enduring love of family at its core. I feel so blessed to have shared in the evening together!

Friday, August 22, 2014

Another Year

I remember being told growing up that birthdays weren't the same when you're an adult. There aren't the celebrations, the large gift exchanges, the cake with candles to blow out. And as I've aged, I've come to understand this truth, and birthdays have become mere reminders of how much time has gone by, so fast you can almost feel it blow like wind through your hair with a W O O S H.

With my birthday looming in just a few days, I have been anticipating it with the same adult perspective I have for at least fifteen or sixteen years. I don't want a party or a cake. I told my mom that I would be happy to ignore the day all together, especially since we'll be heading on vacation just a few days later. But tonight I started to think about it, and my opinion has started to change.

Just weeks before my 37th birthday last year, I underwent a surgery that led to sepsis, so I had emergency surgery the next day. I lived through almost a week in the surgical ICU and another five days on a normal surgical floor. I spent almost two weeks in a rehab hospital until my body was strong enough to go home. Close friends made a birthday evening for my mom and I and another friend. I received several meaningful gifts. Being home was the greatest one.

I spent six repulsive and challenging months with a dysfunctional colostomy (the surgeon even called it that.) I felt imprisoned by it. I felt awkward and petrified to leave the house. There were days when mere movement created incomprehensible issues. The experience was humiliating and horrible. I couldn't wait to have it reversed. By the grace of God, my surgeon was able to do that without issue the end of January.

Since then, my wounds have healed. My mom and I spent a blissful ten days in Florida. It was amazing to feel the sand between my toes and hear the surf as it crashed on the shore. Because of the amazing salt air, I was able to go almost the entire vacation without wearing my oxygen. My lungs felt clean and strong!

Since then, I've been blessed with time spent with my precious nephews. I discovered that I enjoyed writing a blog, and my 9-year old chocolate lab Zoe is usually at my feet as I do it. My mom and I are going to Colorado the end of the month to reunite with her brother Rusty's family. We're taking my nephew with us, and it will be his first airplane ride. He's going to be reunited with his cousin Ella, and we ALL get to meet her new sister Olivia. I can't wait for this getaway, especially to see the expressions on my nephew's face as he experiences all the new adventures.

As I think about all this, about all of my triumphs and blessings, I realize that I have a LOT to celebrate this year. God has blessed me with so much! Time has W O O S H E D and W O O S H E D and                   W O O S H E D some more as I've undergone and overcome all these struggles. And as I've enjoyed all my blessings, it has W O O S H E D even more. All  these things have passed me by so quickly, it would be easy just to go on living without slowing down long enough to acknowledge them.

Being a grown up and not wanting a birthday celebration shouldn't be a reason to pass up the opportunity to celebrate and show gratitude for another year of life, especially because it's a year I almost lost. I could easily be watching my birthday from the other side, and I am grateful to be alive, truly alive. I don't need a party or cake or especially any gifts because I already have the GREATEST gift ever, and that is this life. This challenging, beautiful, humorous, inspiring, exasperating, blessed, and amazing life. I have to put the break on the W O O S H  lest these years and their gifts pass me by. Nothing sounds better than a party for two, just God and I, celebrating my birthday this week and our partnership of love.

Monday, August 18, 2014

Low Tide

It has been awhile since my last blog, as my creativity was temporarily out of order. I've been over-saturated with the dark part of my disease. There is a misnomer about physical pain affecting only the physical part of a person. It actually affects the WHOLE person, mind, body and spirit, and that is where I have been.

I've been all wrapped up in this pain that makes me feel like I have a straightjacket on physically, emotionally and spiritually. My body is controlled by the pain, my mind is controlled by the pain and my spirit is controlled by the pain. As much as I try to remain positive, there are times (ie. the last few weeks) when I feel completely paralyzed by my pain on every level, and I feel ashamed, because it makes me feel weak.

It's like an eclipse of the sun when everything gradually dims, and suddenly you find yourself in complete darkness with no light except the low wattage flashlight from your heart that reminds you with every beat that you are still alive. Were it not for that pounding heartbeat this past week, there were times when I thought perhaps I was dying. My mind and spirit felt as though they were shutting down. I was detaching myself from long-term goals and hopes for love and romance. I stopped imagining the type of aunt I'd be to my young nephews when they grew up and planning how to make my book-writing dreams come true. There was no future. I was sinking and scared.

Like a snow storm, my severe pain has made it impossible to see even an hour ahead of the present. It takes ALL of me to keep me on track, the pain would happily derail me at any time. It's like a wicked imaginary friend who sometimes makes living very challenging. Surviving each moment is a feat of great proportion. The physical pain is horrible but its the emotional and spiritual pains that are the hardest. My pain is like a veil of darkness that falls upon my mind and spirit, sucking out any hope of escaping the nightmare my body is enduring. It suffocates me emotionally.   

The physical pain makes me hurt to move, to breathe, to think. I have been isolated by my illness for so many years, keeping me at home for the most part, as I can't drive on my medications. It is hard to do a lot between my physical pain and my need for oxygen. However, in the past week, it has isolated me to my bed for the most part. I have been so overwhelmed and depressed, and my spirit has no energy.  Last week I found myself staring at a wall in the dark. By the time I realized I was doing it, more than an hour had passed. I have been immobilized by this pain and what it is doing to my life.

In a week I'll be 38. I'm on disability. I haven't been in a relationship or even a date for eight years. I don't remember what it feels like to kiss a man or just hold hands. And for as much as I would love to meet someone, I don't know how any man will ever want to kiss a woman who in on oxygen. I can see it now; I'll be making out with someone in my bed, we'll be rolling around in passion and we'll get wrapped up in my oxygen tubing, and our arms will be wrapped so tight that we can't reach our cell phones to call for help. Hmm.... not entirely my idea of reigniting my love life.

As I write this, I feel so much shame. I'm ashamed of the pain, of my shortcomings because of the pain, and of my future if the pain continues as bad as it is today. I feel like I sound like a whiny wimp, and the last thing I want is to sound like I'm feeling sorry for myself. That's the last thing I want, the last thing I think any chronic pain patients want.  I create these posts to reach out to others with similar challenges, with the hopes of making them feel less alone on their journeys with pain and all its manifestations.

I share these experiences in an effort to make a difference, to inspire, to reach out. I suppose I'm sharing my lows, my weaknesses, to let others know that it's OK to admit to those feelings, because they ARE real, they ARE valid, and they are a large part of life with chronic pain. I don't want to be pitied, just like I doubt others do. This post is about the human condition in midst of this war. I've always heard the saying, "Leave no man behind."

I will not leave you behind. Keep reading.