Why is the blog named Rising from the Fog?

Why is this blog named " Rising from the Fog" someone asked me....

And here is why.

You know what fog looks like, kind of mysterious in nature, like mist hanging over a piece of land so thick, you cannot see in front of you. Never mind trying to tread through it. Well honestly, for a long time that's how I have felt in a way.

One of my major complaints before diagnosis I had been complaining that I had a loss of focus, that I did not feel as sharp as I once thought I was. I couldn't concentrate for any great length of time - In a sense, I felt foggy.  My brain worked and yes, I forget things and I am a little OCD on certain things but I knew somewhere in my brain what I needed to do, but it just wasn't clicking with the other parts of my brain. Trying to make sense of it all seems impossible at times. Those who suffer chronic illness can probably understand it first hand.

You just aren't yourself. Its confusing and its painful emotionally. Its frustrating and humiliating. Its just one big cluster of junk all put together like tangled Christmas lights you cannot unravel. 

In knowing all of this, I over -compensate when I am "on". I keep running until I am dropped to the floor and can only lay there - emotionally and psychically spent. 

Strange as it may be, yoga has definitely helped because in yoga I have to surrender and learn to see the bigger picture in the small footprint that is me. I am forced to just let go and rise from the fog, even if still foggy.

Its been awhile

Oh what a whirl wind I have been travelling on....and it seems that the ride is still going...

I am not sure where to start....

Because of my condition Paul and I decided to make a change in our live. We are headed south. We hope the more temperate weather will help ease some of the pain that I live with daily. We hope that I can start to see the value in myself again and will be able to be productive.

So in the past 6 months or so, we bought a new home, a business and the moving van is making its way here to pack our stuff and head South.  We chose Hilton Head Island, SC mainly because of the opportunity given to us and the proximity to my parents. We weighed the pros and cons of my health care, his work, and our lifestyles and want and where we wanted to be in a few years. His job is still there - he will be working from home for most of the time and will spend 3 to 4 weeks at a time up North 3-4 months out of the year. Not a bad compromise for the security its giving us.

Doing this will allow us to spend more time together that is quality driven. I am not saying its a remedy to erase the pain because I am realistic. But it is one of hope...

Today I sit in Southie, staring out the window, remembering when we moved in together, wondering how we accumulated so much stuff and how leaving is so bittersweet.

I will not miss the feeling of being confined because to climb three flights of stairs is a lot when your hips, thighs, feet and arms are always screaming. I am not going to miss how I have felt since I have flown home - cruddy to say the least. What I will miss is the colorful characters who walk the streets. I will miss being able to walk to downtown Boston (which I haven't been able to do in a few years). I will miss the history and the sounds of the metro bus outside the window.  I will miss my friends and family.

As you know leaving family, can be rough and I know that we will live each day torn with the anguish of leaving some of our dearest family and friends. However, a true friend never leaves your heart...and they are embedded in your soul.

I am looking forward to the next chapter...

Pace Myself? Seriously?

In my little world, pacing onself is one of the skills you must learn or adapt to. For many its such a diffiult task and just another thing we need to add to the list of “to do's”! I

For me, its an admirable skill to watch in action. Primarily because I find it harder to do than most anything else. I am a type A personality trying so deseparetly to live a type B life. Maybe by the time I am no longer able to care for myself I will have figured it out.

Intellectually, I know that I need to practice pacing and for all that really care – self patience. It seems I am more patient with the rest of the world than with myself. And I think for me they go hand and hand. Emotionally, I want to run with wild with the horses by the sea....

.. So every day I wake up and think to myself about everything I want to accomplish. I check in with my body to see how its feeling. Where is the pain is the most severe, what is crippling me and what may work. I know I want to do my yoga because even if it hurts – I know its so good for me! I know it’s the right thing to do and my body will thank me later. I know I need to fuel my body and of course that brings the additional stress - what to eat, what my body will handle today without wreaking havoc on my stomach …God, my stomach has been through hell! I am trying to learn to be gentle with it. It’s not always easy. 

There is life beyond eating, and in order to feel human I need to do something productive and practice being functional. Thoughts running through my head -  can I clean the house, go for a long walk, have lunch with a friend. Or is it a day for sleeping and stretching. Who knows….and this is where pacing will go out the door. I can see my brain saying go for it, and there is no stopping the inability to pace unless something stops me first.  Yep just like that….in a moment it is gone….because if my body is working, I am going to fight to the finish to get as much done as possible. The warrior in me wants to fight and win the war but you know and I know, if I take on the battle I will eventually lose. I always lose this battle and yet I go on and on thinking one day I will win. Is this the mindset of someone trying to retrain themselves or someone who is beyond help and will just funnel down through the rabbit hole.

I ask, is my problem really about pacing or is it about self-control, or do they go hand and hand, and the list goes on.  I ask, is it about pacing because I know I really don't practice it - well at least not well. I don't know. Its all so confusing and seriously, I get a headache thinking about it. I get a headache thinking about pacing, which is a practice that my body needs to attain...kind of ironic. And with the feeling of being defeated, I will take myself to one of my favorite spots...sit back and watch the waves rush in and fall back, ebbing and flowing through their cycle. Why, because this I can do well...at least for a little bit of time.

Changing lanes, Changing life.

Isn't it funny how changing lanes on the highway sometimes can reduce your stress, it can change your attitude, therefore, change your life, your well being........

Paul and I have been talking about moving for a few years now to Hilton Head, South Carolina. Its a place that brings me comfort and peace. Its an oasis of sorts. Paul started coming down with me 7 years ago when we first started dating. It is a place for both of us that allows us to be more active outdoors, spend more time on the beach or in the water - which is something we both love. It brings a calmness to our souls.

The decision to move away from family and friends is never easy. You become torn between not wanting to leave and wanting so much to have a different quality of life - one that is more authentic to you.  For me, the move to Hilton Head is easier. My parents are in Hilton Head. His Mom is not (although she is always welcome). His kids are in MA, and the list goes on and on. So when it came to making the decision of when, I really had to step back and let him figure out what he truly wanted and give him the space to bring it to me when ready.

At the same time, life gets in the way....with the pain that I feel daily and other complications that surround my illness, making a decision sometimes fast forwards itself. My pain was only getting worse and I was dragging myself this place and that place trying to find a quality of life that let me get off the couch and be more active, more productive. So we decided together to make the move this year. The more temperate weather is supposedly good for the body.

We got lucky and were approached to buy a small business. Something that would bring supplemental income while we try to settle in to our new surroundings. Our plan is laid out so the transition is slow and accommodating to both of us......

As a result, I am currently in Hilton Head. I have been here for a month. And while its been a quick four weeks, it also feels like forever since I have seen my love. I miss him so much.

However, on the flip side, I am settling in. Yes, I am still wiped beyond words, I have pain all over but its not as extreme as it has been. The temperate weather is helping. 

Its strange how one thing can change the direction of my illness and give me some sort of quality of life I am searching for. I know there will be difficult days, I know I will always have pain. How I choose to control it is how I change lanes, therefore changing my life.

Redefining Me?

I would have never thought I would be trying to figure out how to live again.  It seems to be an ongoing theme in my life.

Years ago, I started over because of a divorce. I started over again and again after several layoffs and today, I find myself starting over again because of illness. Strange how that is to me. So foreign yet so familiar. This time (over the course of a couple of years so far), I am so unsure of my being. I am stuck between my will and my ego. I am in a war with myself.

The limitations - physical in nature, is something I did not have before. I used to be able to go to the gym and work out to my hearts delight - pushing myself to another level. Today sometimes lifting a jar of peanut butter can be taxing. My mind is all clouded and it is not as sharp as it used to be which brings on total frustration. How can I get that back, will it ever come back. The pain, what is the scale of pain and where does it most hurt...here, no here, no there...ask me in a minute, my answer will change. But even bigger than that, am going to be paralyzed by it for the day by it.  I know that my body is broken and that the stomach hates me and my liver is not in the best of conditions. In fact, the condition of the liver sucks but its just a fact of my life. I know foods I once loved make me sick. I know my hair used to be thicker and shaving my legs is no longer an issue. (some of you are really, you don't shave your legs, but when the choice is taken, the whole mental thing comes into play.) I know I am stuck in a place where obstacles are a daily word and sometimes there is no getting around them without changing who I am and what I can do. 

I know I have had choices taken away from me before - I had a full hysterectomy at 27. So the choice to carry a child was never an option. Kind of ironic, I wanted a house full. And its not that I wasn't graced with children, I was through my first marriage. I am a step-mother to three amazing young women. And even now, I with Paul, I have two amazing young adults in my life. So yes, I have children - five to be exact, all grown, some with children of their own. I am blessed. 

But I digress....how do I start again? How do I redefine my dreams, my hopes, my passions, my world? To be honest, its such a struggle in my head. It's the war between the wants and can haves. Intellectually, I know what is best for me and how to make the best of a not so great situation. Emotionally, I suffer because I almost feel as if I have let myself down. Granted, I have done everything I need to do from a medical standpoint. I see the doctor (way too much), I stretch, do yoga and even exercise. I eat fairly well, I educate myself. I use the modalities taught to me by professionals. I just don't know where I am going at times. The things I so wanted originally for myself and Paul are in the past. I cannot have some of them. Maybe, I am trying hard to save my dignity in a way; to salvage my dreams....

One small step brings me into today. One small step each day is a part of my evolution. Am I really redefining myself or is this all one big master plan? This is what I will most likely ask myself for years to come as I find passion in things I never dreamed of, live life to the fullest of my capability. My dreams and hopes will change colors as they ride through the wind and I am grateful to have them.  I am breathing! I am learning to let go and be filled with grace and humility. I am surviving to be the best I can be. I am living in today. 

Without self-care, self-love; we are not whole,only pieces of shattered glass.

In life, we often take too much for granted, such as self care, self love.  Like glass, life is fragile. When it breaks it shatters, sometimes into tiny little pieces and we can get lost in the midst of the daze of crackling glass all around us.

This past weekend, one of my best friends lost someone close to her. A family member. The passing came sudden and this person was far to young to leave this earth. No one saw it coming. No one can believe it happened. The shock and devastation have left this family feeling as if their heart was ripped from them. They are moving in slow motion trying to figure out the pieces of not the loss of their lives too on how to walk through moments, the hours, and days ahead without their loved one. 

Its all so unsettling to think about. My heart breaks for my friend, her husband, her sons and the extended family. I cannot take away the pain. I cannot put a band aid on it and see it heal. Life is not like that and neither is death. I can hold her hand as she tries to mend the heart of her children and help her husband battle his pain. I can listen and let her know she is loved.  Most of all, I can remind her to take care of herself, that her life is priceless to all around her and she needs to be the best she can be - for herself, for her loves. 

It also reminds me, that my life is priceless and my ability to be the best I can be is essential to my well being. Having the medical issues, I have are obstacles in my way to my optimal health. I cannot let those keep me down. Self- care is a priority. Self-love = a better life.

<3

Keeping it Real!

Okay, you know when you do something so little, so stupid and the next thing you know your back is sending shock waves of pain up the back, down the back, in the groin and down the legs....well I feel so STUPID.

In the wee hours of the morning about 10 days ago, I tweaked the back. Yep, it took all of -2 seconds to feel the surge rush through my body.  How the really stupid thing happened doesn't really matter. But dang it hurts something fierce.

So does it hurt more because of the underlining issues or is it all from the very small tweak? Well I can tell you that all the other aches and pains have happily come together to sear the pain through my body sending crazy signals to my brains through my nerves. Unfortunately, when you are sick and pain is a part of your everyday existence, doing something stupid that causes more pain, only adds to the misery and makes the trigger points more sensitive - at least in my opinion. At this point, pinpointing the source of the pain is almost impossible. 

And yes, I have done everything, stretch, walk, meditate, acupuncture, massage, heat, pain relievers...please someone give me a break here. 

Last week, I couldn't even write. The pain was so intense. Does that mean I am progressing I guess so. The worst part was that I had to travel. 

We all know it sucks to be in pain because of a back tweak or any other debilitating factor. 
Please understand I am not complaining. Honestly, I am kind of laughing because if I don't I will cry. I am just keeping it real. 

Is there a message in this, nope, just a part of everyday living.

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....