Admitted at Cedars

After my seizures progressively worsening - I was admitted to Cedars Sinai. Yet again MRI and an EEG as well as blood tests. I had the requested CT Scan done at RRH this past week. As if now Ibhsbe nkbg? I am averaging 4-5 seizures each day for unknown reasons. As of now, Friday morning, nothing  has been done to stop or reduce them. I am being given Ativan IVP along with soma and morphine for pain.
Just going to keep it this short. With meds and confusion its so hard to write. I am constantly correcting and fixing myself. I realize that it isn't just meds- my brain is just plain struggling.
I have great nurses. Day nurses are enjoyable and for the most part enjoyable. One today was scared of my seizures. They are just different. The Stafford  the past two nights I have begged to stay - i.e. cancel flights everything. She offered to hide me in her suitcase. That would be Jennifer the RN from Canada. She is so much fun its just unreal. She is strong and understanding during  seizures. The Clinical Partner Adele is rough around the edges and a former poster worker. I couldn't be more blessed by both the care I am getting but the love and personality- and laughter they bring.
Ok my brain is hurting not good. Off I go for no. i don't have any news to report. Hugs.

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!

What have I experienced - Pituitary Adenoma

I had a few folks ask for clarification yesterday after my blog.  I have a confirmed pituitary adenoma. For now it is assumed this is the source of my health issues. I believe that this has been the source for quite sometime now. I can actually look back to health issues nearly 8 or 9 years ago and wonder if perhaps this goes back that far. I had a myriad of symptoms and the doctor was positive that I had an adrenal problem. The tests were negative, however, my pituitary was never checked.

I try to find a balance educating myself about a diagnosis online. I personally need to have information to feel at ease. The unknown totally freaks me out. I am cautious to look at sites such as Cedar Sinai (recommended by my physician), UCLA, John Hopkins. All provide some very good information on the condition and it's variety of concerns, effects, treatments, etc. It's helped me to understand why I have some of the symptoms I have experienced for SO LONG!!!

Just a basic "list" - diarrhea, nausea, racing heart rate (I've been told this was anxiety, but I didn't feel anxious just like my heart was beating out of my chest), mood swings, headaches, problems with my periods I don't even know how to detail - I ended up having a partial hysterectomy to "stop" part of those symptoms...myoclonic seizures, essential tremors, loss of balance, dropping things (same hand as tremor), unbearable joint pain, muscle weakness, bruising, hair loss (hand fulls), acne - quite odd in nature really, facial sinus pressure, insomnia, fatigue. Any attempt to exercise - I mean walking slowly for 10 minutes I would be so sore no amount of muscle relaxers, narcotics, anti-inflammatories would treat the pain for a couple of days. Pain so intense I can't sleep. Heat intolerance (sweat like crazy if it's the SLIGHTEST bit warm), cold intolerance...the past two days I have been melting. I prefer the cold intolerance. I can always seem to get warmer.

I'm not saying any of this to complain or for sympathy. I want to be clear on that. My whole purpose of this blog is to educate, help others dealing with the same thing really. I started this process and I looked and looked. Finding something, someone experiencing anything like I was - I never found it. It is so frustrating and so lonely to go through an illness - undiagnosed and without anyone that is or has experienced what you are going through.

I started today's blog - I was going to talk about dealing with the diagnosis. I am a bit focused on the physical symptoms right now. My symptoms the past week have been yuck. I feel rotten. As has gotten so common, it is affecting my ability to function even simple tasks - cleaning around the house, work, interactions with family and friends. The last few days the gastrointestinal symptoms have been awful. The headache and pressure strong, as well as the muscle and joint pain. Last night my heart rate was crazy and as usual lead to a myoclonic seizure and ativan injection.

My emotional reaction is all over the place. I guess in time I'll get better in touch with that and how I'm feeling. I'm not really sure how to put it all into words quite yet. I'll get there... Maybe next time? Till then, please feel free to ask questions or comment, what not. I'm open.