The List.

Every year or every two years we are suppose go to the doctor to have a physical. They call it a wellness-check. We get blood drawn, standard exams done - all to make sure our bodies are working properly.  It is during this moment or hopefully half-hour, we get to air our grievances of what's ailing us.  At the same time we need to hear the on slot of things we need to do to be a perfectly healthy human being. Everything from losing a couple of pounds, exercising and eating the right foods to name a few.  We are handed a list of screenings that should happen at this time of our lives from boobs, to butts and hearts. I am sure some of you know the drill.

If you are like most, you have a list in your head of what you want to discuss with the doctor but for some reason never get through it.  And once you have left, your banging your head saying why didn't I tell him/her about that.  I used to be that person. One day, I walked in with an actual list  in black and white and it changed my life in so many ways. 

A couple of years ago, I walked into my doctors office with a list that looked like I was Santa checking off who's naughty and nice. It was longer than my large intestine. Humiliating as it was, I went through the list, item by item while at the same time I was doubting the reality of all the symptoms. I felt as if the doctor was going to think I belonged in a psych ward instead of in his office. I kept my stand though mainly because tolerating the gut wrenching headaches, the lack of sleep or the constant nagging in my body for more sleep, or strange pains I knew weren't muscle soreness from the gym was no longer an option. I needed help. I was totally off my game, I couldn't focus. My stomach was a mess, my skin had changed and the list goes on and on. I knew something was wrong. What was wrong was the mystery.

Bringing the list, however long My list however long, was a wake up call for me as I read through it  and for my doctor. I offered a challenge and I wasn't going to back down. 

From here, I have surrendered myself to biopsies, Cat Scans, MRI's, vials and vials (and bottles) of blood that would make any vampire happy and to more specialists than I care to know exist.  Its as if the the threads of my being that were so elusive and tangled were unravelling and spinning out of control. Granted there are a lot of knots even still today and even the most precise tweezers cannot seem to untangle. You know your in deep, when you call the doctor's office, and they know your voice or you walk in and you do not even have to check in because as the receptionist looks up to see you walking in, she has your chart in the nurses hands. 

All this because I spoke up at a physical. All this because I chose to take action. And while its depressing at times, I know how lucky I am to have an incredible team of doctors and staff standing with me, yes, with me! .  My catastrophe is not so bad, I am breathing which is half the battle. And yes, it can be frustrating because there are still so many unknowns but its okay. My list saved my life. 

Pain, Guilt and Anxiety Oh My!

It never seems to amaze me at how guilty I can feel when I am beyond wiped out, when my body cannot move and all I want to do is crawl in a hole. But even crawling into a hole would be tough.  It amazes me because this is when life stands still for me. I know it means that I am beyond fried, spent, exhausted etc, for the day. My best friend for the day is a heating pad, a cup of tea and my pillow. It blows my mind because I do not consider this living and I want to live fully without having to plan every moment again. And everything I impose on myself to get completed, will not.

Looking around the house - there is dust, a pile of laundry waiting to be done and floors to be swept is so out of my reality today. This, in-turn, is when anxiety starts to build within the guilt and the torture I endure within myself creates even more physical pain.  Intellectually, I know I do not need to have the feeling of guilt and not to get everything done, truly I do. Emotionally, I still cannot seem to bare it. But I have to pull myself out of  the spiral before I fall through the black abyss and I make it worse. No-one is making me feel this way other than myself.  The self-inflicted wounds are narcissistic now that I see it in black and white.  How do you go from being a Type A personality to living a Type B lifestyle. 

In the past, I was someone who was always on the go. Life did not slow down, it kept moving and I was running with it. My house was always clean, albeit never perfect but everything was put away neatly and dust rarely existed.  My social calendar was full, I was in a job where I was paid to make decisions, I spent a lot more time at the gym, and not much phased me. The little aches and pains were just little. Now there are days when I watch the dust grow and the biggest decision I make is whether to lay on the couch or go back to bad. (Please know that not everyday is like this although when you have one of those days, you do feel as if its every day.) 

The guilt rises within me like a tidal wave. The burdens I feel are of my own doing - no one is making me feel this way. It is me alone who feels as if I am not contributing in ways I believe I should. Bluntly, its a sucks.  And sometimes the frustration builds to the point of being unbearable, bringing on the tears. This morning is one of those days.

You can look at me and not get it. You will have trouble comprehending what I am telling you because you do not see a sick person. I am not hooked up to a machine, I am not sneezing or coughing. (I may be running a temperature if its around 4 pm).  There is nothing on the outside that tells you I do not feel well. You cannot feel the way the bones hurt, the throbbing in the head, the fire of the pain as it surges through my body. You won't notice the little things I notice on my skin, in my hair or in my case loss of it. You won't see that the liver is malfunctioning or the muscles feel like they have been through the ringer. You won't be able to understand the rage of pain searing across my chest and how it feels as if someone just keeps punching me from front to back and back to front. I don't expect you to get it especially in light of the fact, that I don't always get it.

There isn't a day that goes by that I do not feel some sort of physical pain. The degree of pain is all relative and hard for some on the outside to understand. A good day versus a bad day is different when you pain is always an element of life. I am lucky.  I have learned methods that help  register the pain lower such as meditation, pain modality therapies and certain  forms of exercise, stretches and yoga. These tools do not take away the pain but they definitely help manage it. 

These tools also help me manage the anxiety. I cannot say that for the guilt though - I have Italian and Jewish blood. I was doomed from the start when guilt is concerned. 

Although my journey is mine, I know I am not alone. There are so many suffering from a multitude of Autoimmune diseases, Fibromyalgia, Chronic Fatigue Syndrome, etc.  The knowledge I have gained is powerful. What I am learning about my illness's and others is amazingly eye-opening and the stream of my consciousness is extremely present. In the midst of pain, guilt and anxiety, I find myself once again filled with a sense of gratitude. 

In the name of love

Love can be magical and mysterious. It can be soul-crushing and devastating. It lets us know we are alive. It lets us know what we are capable of with every twist and turn. It is simple and yet oh so complex at the same time. It is immeasurable in my eyes and it takes a leap of faith and time to let it blossom from infatuation to a truly amazing, nurturing relationship. 

With love comes romance - romance to me is so much more than Valentine's Day. It is so much more than a holiday designed specifically for love. It's about the first words spoken between two when you wake. Its making someone a cup of tea or coffee the way they like it. Its the way they hold your hand and touch your face. Its the way they care for you when your sick or how they pick the perfect gift you never saw coming because of a story you may have told them. 

When I met Paul, I knew he was my life partner. He came into my life like a whirlwind - it was love at first sight.  It was well beyond the infatuation. It was unconditional, non-judgmental.  It was the kind of love you knew had roots that were lasting. And today, I am more in awe of our love than I ever knew possible. I am more in love with this man, my best-friend, my confidante, my rock with each moment in life. I watch within my heart as each day becomes months and the months turn into years. My heart is full and complete with him by my side.

For the past few years, as I became more tangled in the web of illness and grief, he has held my hand, wiped my tears, watched me fall and picked me up like no other. He has not run even in the fury of darkness. And although there are times when I question why he has stayed , I do not question how lucky I am, I only bask in the essence of it. 

He is love. My forever love. 

Welcome to the chronicles of life

In life we are given challenges, some good, some not so good. All leave us with something at the end, even if we do not always recognize it immediately. My journey through life has been no different. It has been filled with trials and tribulations, joy and sadness.  All and all, even through all the pain, I know I am truly blessed. And for this I am grateful.

I decided to write this blog after much prodding from others (well a few specific people) who know my story. One of the objectives of this blog is to heal myself through my words.  Maybe my words will help others or others can help me.  I am willing to let the chapters/blogs unfold naturally without filters. You can be the judge of how they make you feel.

I do know that my writings will make me vulnerable in ways - sometimes they will be raw and gritty, other times I hope my humor will filter in and you can see the less serious side of me. But all will be authentic. 

Without going into great detail at this point, let me give a little background. The last few years have been a rollercoaster and I hate rollercoasters. It has been filled with endless doctors appointments, blood draws, special tests and lots of long hours of not knowing. There have been diagnosis' of many things, changes in lifestyles and in the end it comes down to a body broken.  It is only now that I feel I am starting to rise from the fog that I have been sinking further into. It is only now, that I feel I am truly ready to write. 

Whether you choose to come along for the ride is totally up to you. This is my journey....