Que Syrah Syrah

During my illness my parents gave me a great sign "Que Syrah Syrah" - "what will be will be". A reminder that my constant worrying doesn't change a thing! Perhaps I need it tattooed on my arm.

On Thursday as we sat in the waiting room at the endocrinologists office, I found myself a bundle of nerves. I was terrified of the unknown. Isn't that always what we fear the most?

A man came in late thirties early forties. He sat down and immediately began telling us how over many years his health had deteriorated and just two weeks prior he had a heart transplant. As he shared his experiences my mind wandered very quickly away from my own issues. Initially, I was thankful for the distraction. As he continued to talk I realized that while my situation has seemed so scary - I haven't required an organ transplant. He later mentioned briefly the thought that someone else lost their life to give him life. I could hear a struggle. Why was he given life over someone else?

We all have our challenges. This strangers story was unique and emotional to him. I know so many friends that have experienced their own challenges. Some resulting in wonderful success in the end, some diagnosed with chronic illness and pain that has forever changed their day to day life, a few that despite fighting the unimaginable have died far to young.

Mom, Jeanie, Carrie, Michealle, Nance, Lenny, Zach your strength and courage are my inspiration. Miah, Tammy and Gina you fought courageous battles and were taken so early from this earth.

In the end for all of us, what will be will be. We fight, we do our best to be strong, to maintain our improve our health. Ultimately, no matter your spiritual beliefs worrying isn't going to change the end result. Arguably, it may even make it worse. So, no matter your individual challenge today or tomorrow - remember - Que Syrah Syrah ......

Spiritual Strength

Through this struggle I have spent so much time in self reflection. Learning more about mindfulness (something I had NEVER even heard of before last August) and really trying to strengthen my personal spiritual beliefs and relationship. The mindfulness part I am still working on - don't asked me for a definition off the top of my head just yet.
I consider myself a Christian. I believe that Jesus died for our sins. At them same time perhaps I am unique, I believe we can learn a lot from other spiritual beliefs. More than I can count I have been touched and lead to prayer and deep thought by teachings from the Dahli Lama and  Buddha just as examples. I am not party of a church. I have many personal reasons. Perhaps them easiest for me is that for me my spiritual journey and relationship with a higher power is mine. I choose to not feel required to follow a groups rules. That is a very personal decision for each individual.
God has provided me with support, strength, motivation, love and so much more from so many sources. It has been amazing. Coming out of the hospital in August he provided a  doctor who I truly credit with my life. He is of the Sikh religion. He is peaceful, smart, compassionate, empathetic, strong in ways no other doctor and few people I have ever met. He cares about his patients as a whole person. He immediately not only was treating me with traditional Western medicine but also a variety of time tested Eastern techniques including private yoga sessions to address my health issues (not fitness as we usually associate). Special types of breathing, transfer of relaxation so many amazing spiritual healing connections. I don't know them words to explain this blessed experience.
Acupuncture has been a massive part of not only my weekly treatment but instrumental in my current diagnosis, pain relief, nausea treatment, headache treatment, seizure treatment, emotional balance -  all limiting the number of medications I have had to take as well as allowing me to become more in touch with my body.
Through all of this I read a book by popular author Dr. Andrew Weill "Spontaneous Happiness". It did such an awesome job bringing so many of my personal experiences into words. He also has a book I learned about in the same book called "Spontaneous Healing". I am just starting to read this. I already can highly recommend both books. I'm not one for self help books and such, but given them challenges I have been facing I found his experiences and explanations inspiring and helpful in so many ways.
So how has this all affected me and my decisions, day to day living... one of my hardest struggles was how do I continue to work with all of these symptoms I am experiencing. The brain fog, slow cognitive function, tremors, severe fatigue, not to mention no longer being able to travel due to the seizures. The list felt never ending and overwhelming. I  prayed for guidance read scripture,  talked with my husband, family, friends, therapist. The guidance didn't touch my heart. I was really stressing. One evening as I was trying to relax and Brett was watching TV a wounded Marine came on, he said Sarah, you'll want to see this. I sat and watched a young Marine that had lost 3 of his four limbs. He proudly wore his uniform and was surrounded by his Marine brothers. As he spoke his pride and strength was undeniable. It wasn't a show for tv, he said he would go again knowing the end result. He had plans for life, he saw this not as the ends of his life but the beginning of a new adventure. In that moment my answer about work was crystal clear. He was my messenger. I will keep working. I will face my challenges head on. I will see this as a new adventure. My struggles are minimal compared to what he is facing AND he would do it again for our freedom, for the very life I am taking for granted.
I am working on remembering that precious lesson every moment of every day. Today I seemed to have lost sight of it. Tomorrow is another day. To all the wounded warriors that find the strength and motivation of the young man I saw that night - I know great things are coming your way. You are true heroes. And to that young man on TV that night - God Bless You!

Early Morning Reflections

Our Father who art in heaven, hallowed be thy name. Thy kingdom come, thy will be done on earth as it is in heaven. Give us this day our daily bread and forgive us our trespassers as we forgive those that have trespassed against us. Lead us not into temptation but deliver us from evil. For thine is the kingdom the power and the glory forever and ever Amen.
Since my phone call on Friday letting me know the reults of the MRI - I have been blessed by an outpouring of love and support that is nothing unusual from those close. Dinner, snacks, laughter, hugs, drinks, phone calls, offers to help all came pouring in. Although I have been facing debilitating health issues for 2.5 years - the response still surprises me.  I immediately feel the warm blanket of love, true friendship, close family.
Friday I texted a very small group of people. Making a phone call and telling someone at that moment was impossible. I was in a little bit of shock looking back. As it was I didn't even get through my intended list- despite even two more days of the weekend. I have felt fear, anger, sadness, fear, frustration, tears, shock, happy for a diagnosis, thankful that its better than some possibilities we've discussed. Millions of questions anxious to understand and symptoms to improve.
I logically know its fairly common - UCLA says @ 1 in 1000 people live with this condition. Physically my symptoms have generally been worse the past couple weeks. Any stress whatsoever always increases them - finding out I have a tumor in my brain area no matter what - adds some stress, aggregates the symptoms, which in turn scares me, You see the cycle.
After finding out, I began slowly sending a few texts explaining the test results. My unitial thought just tell those that knew I was having the test and waiting. I didn't quite get through everyone. Just hearing it - I was exhausted. I did some relaxation followed by a 2 hour nap. NOTE: VERY important lesson I have learned through this, everything is easier after some sleep or even just relaxation. I can handle sleep often proceeded  by deep relaxation breathing and repetition of The Lords Prayer in my mind. (your repitition or vizualization of peace must be your own).
I woke to a text from Renee that as we do and have done forever - she was bringing over appetizers, planned to try a new cocktail - a Gimlet and Happy Hour would commence shortly. She and Tia were soon followed by Joe, Tony and Correen. I set to work in the kitchen cooking - therapeutic and along the lines of the 1950s which we all enjoy. I made the dinner as planned for the evening. Salisbury Steak with mushroom gravy, mashed potatoes, peas and of course a Jello salad. Felt wonderful to feed everyone such a strong meal.
Saturday was quiet time with Brett  a visit with my grandma that I am so blessed to have here still. My body needed rest. It seemed to be flipping out!
 
Sunday was comforting old Marilyn Monroe movies, Joe, Rod, Candice and Boo brought dinner and we enjoyed laughter and good times followed by the Grammy's.
I was able to have so many great discussions with loved ones despite how I was feeling - social media options provided just what I needed.
Last night was a rough night physically and emotionally. I went to bed determined to take Sean to school and head into work for a few hours. Unfortunately, my body had other ideas and the jerking started early. Dry mouth, something I haven't talked about much but it was quite annoying last night. Nothing seemed to help. Nausea, Hot and sweaty - obviously my own heat wave when everyone else is wrapped up in quilts.
It is now almost 7 am. I had ativan about 4 am, dozed off and on about an hour all night. I have recited the Lord's Prayer maybe 100s of times over the last night. It helps me refocus, relax, accept the changes of my day. God has truely blessed me! I am so thankful for his peace and direction as I move through this challenge. He has blessed me with a husband, kids, family and friends that couldn't be better. I'm learning that my expectations aren't important. I just need to be comfortable.
We shall see how this day will go. I give my expectations up and will relax.
Thank you all that have been so wonderful throughout this journey!

Angry and Alone

I am ANGRY everything I know and loved has been taken from me. I am sad because I am very alone. Unless through this they don't want to understand. They really don't want to hear about it either. When it comes to reality no one knows or much cares to understand to see that others in our lives suffer,or struggle. Its much easier  as a friend, a co-worker, a family member to just ignore it, ignore the person. Walk away and ignore the struggle. We all want to live in a world where things come wrapped in  a little blue box with a white ribbon. If what you hear is not that then what? worse even its something that you don't understand, Sometimes it brings up your own not so favorite life moments. What's easier than to just ignore it. I wonder how many of you realize i want nothing more than to ignore all of it. I have even tried. Unlike the option you live with i don't have have such luxury. The times I have tried to hard to just runaway for a few minute/hours - its right there wrapping around my leg like a rattlesnake reminding me don't bother I will only strike again.