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.