Category Archives: Life

My Winter is Over

I am a person who is completely happy with the simple things in life – a card in the mail, catching up with a friend, a cupcake! It truly does not take much to make me smile. 

Many times I have mentioned the amazing tribe of people who love me, but I have not really focused on my husband all that much because he does not like the spotlight. It has been extremely hard for anyone to understand what I go through especially him. I am sure he wonders why our life and plans have been disrupted like this. He has to be exhausted by the appointments, the medicines, the surgeries, and the constant management of this trainwreck.

He often says it is difficult to watch someone you love experience illness and pain and know there is nothing you can do. He has the front seat and sees me at my worst. He remarked to my doctor  just the other week that “her 5 is a 9 for most people because she is tough, really tough.” It is a simple statement like that which makes me feel so supported by him. He will, however, agree that I laugh way more than I cry.We have some fun with the hand we’ve been dealt.There are times we seriously laugh with each other! When you have a brain that fires slowly from the disaster living there you can just imagine some of the hilarity that can come from it. Although it is when I am at my most vulnerable, or in great need, that I see myself in his eyes. I see him lost and confused about what he can do to ease my suffering. On two occasions this month my doctor said, “there is no other choice but to bring her to the ER to ease her suffering.” He suffers in a much different way when I cannot stop the train.

I’m bringing him out into the spotlight now because it was the other day when I woke to a wonderful surprise from him. It may seem like a simple act to most, but to me it was everything. Over the past couple of years I have really let my gardening go. My love of flowers shows when I am admiring the yards and planters of others. The people in my tribe have spread joy by giving me some great plants and flowers for my porch. I’ve always been grateful to have something blooming! On Sunday morning I woke up to coffee and flowers… flowers around my bird bath, flowers around my light post, and was shown even more flowers near my back retaining wall. They weren’t just random flowers either – there were all types that go well together. I would have chosen these flowers and plants myself. I was speechless and a little confused because I spent time outside in the Eno on Saturday and planting was not being done. All the planting occurred in the middle of the night when I was completely clueless. My husband donned his camping headlamp and dug, planted and mulched. (Note to neighbors: Nobody was being buried in the dark of night). He deliberately chose my favorite colors, and made certain that I would have plenty of blooming love over the next two seasons. 

This speaks volumes to me. It is something he CAN do. My husband has made my heart bloom during a time when I often feel like there is an eternal winter. 


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I Hope You Feel Uncomfortable 

My best friends (chosen family) do something very interesting each new year. They sit down together, take stock in their lives, and work to create good habits for that year. One of their habits (I really hate the word resolution) is to make a point to do something outside their comfort zone. Their thought pattern has rattled around my head since early January.

Just the other day I announced to my friend that I am boring. Of course her response was “you are anything but boring.” Ok so I may not be boring to the people closest to me, but I feel  boring. Not the I’m going to run out and get a sports car boring, or I’m going to climb Kili boring. It’s not about shock factor or the you-did-what factor at all. It’s about challenging myself and making myself feel a bit uncomfortable.

Recently my family traveled to Washington, DC. We were having dinner in a great little spot that had a piano bar upstairs. While we ate we were serenaded by people singing karaoke in the piano bar. There were some incrediby talented people singing who must sing all the time, as well as a few who obviously do not need to quit their day jobs. I sat there joking throughout our dinner that I was going to try my voice at karaoke. My 12 year old and I began to mull over choices for my debut. Should I attempt Beyoncé, or stay with something less booty shaking? Perhaps Elton John would be more my speed, or something classic like Gladys Knight. Knowing full-well that it was just a hypothetical scenario we began to narrow down my choices. Tiny Dancer it was – seeing as how I frequently belt it out in the car! We both had a great laugh at the mere thought of me singing our beloved Sir Elton John! 

“Next up, Sally!” I looked around very amused for the other person named Sally when my husband said, “You have been talking about stepping outside of your comfort zone and I thought you needed a little push.” Yeah, off a cliff!!! I was paralyzed. My daughter’s jaw was hanging wide open as I made my way to the microphone. What did I have to lose? Maybe a little dignity. I would never see another soul in this place again! 

Note the guy in the back snickering! That’s his she’s-going-home-with-YOU grin.

I’d like to say it was a drop the mic moment. It was awful. I did it though! I sang every lyric proudly. There were some claps and cheers, and NOT from my family.  I. Did. It. Thanks to my husband I was exhilarated, and I showed my daughter (and myself) that it is absolutely OK to do something completely out of your comfort zone despite how embarrassing it might be. I did not feel at all boring that night.

Recently I stumbled onto the blog of a former co-worker and discovered that she and her husband had given up the comforts of “home” and purchased an RV. A couple of years ago they took it all over the United States and experienced some amazing things. Of course it wasn’t all glamorous and it was daily life…in an RV…with pets. The key here is that even though it is daily life there is some level of uncertainty. Low and behold they are heading back out for a new journey in 2016. I will be keeping up with their adventures and daily living. 

Some message is being sent to me – I’m convinced of it. I happen upon the blog of someone I haven’t even thought about in years, and then I’m hit with the movie trailer for  Whiskey Tango Foxtrot over and over again. The BFF and I had added that to our list of movies to see even before I began feeling this tug. I’m not talking about running off to  Kabul like Tina Fey’s character, but I feel like I need to be experiencing something more. My personality is one where I need to have security, and know where I am going to lay my head at night. I am a planner, but I should be a little uncomfortable – Tiny Dancer uncomfortable. 

I read an interesting article on Cosmopolitan about Shonda Rhimes. If you’ve been living under a rock – Shonda Rhimes is the amazingly talented creator behind Grey’s Anatomy, Private Practice, Scandal, and How to Get Away With Murder. In this article she suggests doing what scares you and celebrating daily. All of this is part of her new book, Year of Yes. Her words in this article are exactly what I am talking about, and what my friends set out to accomplish at the beginning of 2016! 

I’m going to try. I can’t promise I’m going to succeed, but I am going to look for opportunities to step out of my comfort zone, do what scares me, and celebrate. My attempts may not equal setting off on the great American RV adventure, or traveling to war-torn countries. Singing my favorite songs in front of complete strangers may be more my type of uncomfortable. Whatever your speed, or your type – I hope YOU feel uncomfortable too. 

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Mrs. Nix Goes to Washington

“Liberty’s too precious a thing to be buried in books, Miss Saunders. Men should hold it up in front of them every single day of their lives and say: I’m free to think and to speak.”

Mr. Smith Goes to Washington (1939), Jefferson Smith

Recently we (minus one jealous undergrad) had the most incredible visit to Washington, DC.

I have long loved the capital of our country and have been able to visit a few times. We’ve also passed through countless times on the way to Baltimore, and I was surprised to learn my husband never had the opportunity to visit despite his father’s distinguished military career. Of course my wheels began to turn, and I started making plans!

The chips fell into place. Red was out of school, we were already heading to Hopkins so it was a perfect time for a stop in DC! I was incredibly lucky to find a great place on Airbnb. If you haven’t heard of Airbnb I highly recommend learning more about it! I uncovered the most fabulous find; my entire family was ecstatic and in awe of this little apartment gem. We were mere steps from the Supreme Court, the Library of Congress, and the Capitol. It was wonderful.

Library of Congress from our apartment


Supreme Court from our steps


The Capitol from our sidewalk

The absolute best part of our trip was catching up with an old high school friend, Mr. Brian Summers. Brian has been setting Washington on fire with his talent! We never expected our personal tour of the Capitol to be what it turned out to be. It was because of Brian that we had the inside look of a lifetime!

Brian had many Capitol surprises up his sleeve!

Being a historian, Brian was able to tell us great stories about the building of the Capitol, the abolition of  slavery, and other monumental times in American history. He showed us things that gave us chills and mesmerized us about our country’s leaders. Some of his accounts were things we learned in classes, while others were amusing stories that are sometimes heard.

He took us behind the scenes through the halls of the Senate and Congress.

Beautiful tiles and art throughout the halls of the Senate.

Some of our favorite parts included: Sitting at the Senate Appropriations table, visiting the press room and bull pen, and meeting Senator Sessions (AL).

Here Brian is grooming his next candidate!


I need Olivia Pope to help me with this Scandal.


Red is either going to be a politician, or a political correspondent after this visit!

The two things that really took my breath away, and caused me to really pause: Standing on the floor of Congress, and being where the President stands while waiting to go out to take the oath of office. No unofficial pictures are ever allowed on the Congressional floor, so we turned over our phones/camera to experience what we’ve only been able to see on TV. It was truly profound. I looked at the seats, the large desk where the speaker sits, and all I could think about was the history that has been made. It’s humbling to think about the speeches that were delivered from that podium, and the great men and women who occupied this room. You could not leave that place feeling anything but proud and patriotic! Red was able to take the walk each President has taken before delivering the State of the Union (and, by the way, we each were handed a copy of the recent SOTU remaining from the evening of the speech). Everything experienced was beyond anything a person can learn from a book; we were ALL students that day. After heading into one of the private cloak rooms, Sarah was determined to be a member of Congress after seeing a freezer full of ice cream! The excitement and enthusiasm was palpable.

Brian showed us an incredible view beyond the arch of a small breezeway – it is where Presidents stand as they await being inaugurated. We were told about President Obama having to take a moment to just breathe, and to take in all of the  1.8 million people who were there for him. Now I do not care what your political views are about any President -you have to admit it is awe inspiring. To stand where Presidents stood before their first day of office goes beyond any political party!


Just between the urns is where the President is inaugurated with a breathtaking view.

Our last day started with another inside look at the old Senate and ended with us on the balcony of the Speaker of the House.


Speaker’s Area


Incredible view off the Speaker’s balcony!

What would a trip to Washington be without visits to the White House and monuments? It was especially inspiring that we were able to visit the Dr. Martin Luther King, Jr. memorial on the holiday honoring Dr. King. As we stood in front of each great statue and memorial we were humbled by the words and the reasons behind them all.

We braved extremely cold days and frigid nights! Of course, the time we finally get the opportunity to visit it happens to be the coldest days of the year, and a massive winter storm was lurking. Nevertheless, our time exploring our nation’s capital far exceeded any and all expectation. We will be back to take in so many other aspects we could not fit in this trip! For a first visit to Washington, DC, my husband and youngest daughter were treated to a monumental tour.

“Faith is taking the first step even when you don’t see the whole staircase.”

Dr. Martin Luther King, Jr.








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The Brain Game

drugs-on-the-brainI’ve entered a new phase in the brain game. I passed go and won two new doctors on my team. I’m building quite the team of amazing professionals.

For this phase in the game I have been introduced to many painful needles, and 22 pages worth of questions about my surgeries, pain, and daily living. Part of me wants to get really creative with the answers – sarcastic, biting, and irreverent – too bad they need serious and accurately dull. If I have to experience all of this I should at least be entitled to a little bit of fun.

I am pretty happy with the new medicine that was prescribed. I have never been able to say I actually see change, and even though it is a small change it is very significant for me! It’s been three months and I have not experienced stroke-like symptoms! Since that was the scariest thing for me a great deal of anxiety has also been lifted. Being with some of the top physicians in the world is making a difference and I am lucky to have them on my team.

So, the brain game continues to send me on 7 hour road trips, and provides me with great conversations along the way. I am rewarded with some of the best crab cakes in the U.S., and an occasional death by chocolate. I fight and race against snow storms, but manage to make lemonade out of the lemons snow cream out of the snow. I’m going to keep playing the game because eventually there has to be a winner and I am a hardcore competitor! My brain may be winning for now, but I plan on shutting it down!

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Lessons From an 11 Year Old

Today all I can think about is a precious 11 year old boy. He’s the son of dear friends, and he’s battling cancer – for the third time.

I remember the day they said the word cancer to Paul and Gillian, and to Owen. It was a regular day in January 2013. I am sure osteosarcoma was never something they imagined hearing. How does an 8 year old comprehend those words? According to Owen, through a deep and abiding faith. He constantly amazes me and the thousands of others who hear his story.

Owen is a true bionic boy too! Medical advances provided him with limb salvage surgery. This type of surgery is very complex and uses an internal prosthesis that is extended as Owen grows. Years ago amputation would be the course of treatment. He had to learn to walk with it and go through intensive rehabilitation. And then there was the chemo…all the chemo. He fought and fought hard! Can you just imagine the joy when they heard the words no evidence of disease?

Eventually Owen would learn the cancer was back and in his lung. More surgery, more fear, and more cancer. Still Owen kept his faith, and I would say his faith even grew. I’m sure there were many days of anger, and shouting why me?! Even though he maybe didn’t cling to God or talk to Him, God clung to Owen. Owen knows this deeply.

I am brought to today – A very difficult surgery for his third occurrence. The surgery involves his lung and heart this time. This tumor is tricky and in a dangerous place, but he has three gifted doctors and the God in which he believes so strongly. So many people are waiting on miraculous news, and I wish I could be there to hold Paul’s and Gillian’s hands as they wait for their child to come through without a tumor.

When Owen had issues breathing recently I wonder what was going through his mind. How did he cope with the anxiety of a potential cancer recurrence? What did he tell himself until it was proven? The strength he showed and is showing is monumental. This precious child is teaching so many people lessons most do not learn until later in life – if ever. 11 years old.

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Invisible Illness Awareness Week (My 30)

Who knew there was such a thing? Happy Invisible Illness Awareness Week y’all! And I didn’t even get you a gift!

In all seriousness though, taking part is a great way to shatter misconceptions and to shed some light on what people experience…what I experience.

I’ve never been one to do the stupid fill in the blank lists on Facebook and then say “your turn. However, I decided to break my rule and go with this one to help shed awareness regarding daily struggles of people with issues unseen.

The 30-Things-You-May-Not-Know…has been blowing up newsfeeds and such this week and I read many things that sounded like my own voice. I’m not crazy, and I’m not an island! Perhaps  someone will stumble across my 30 and find comfort.

1. The illness I live with is: A complex central nervous system disorder (immense head pain, seizure, trigeminal neuralgia, CSF pressure issues, vision loss…)

2. I was diagnosed with it in the year: Early 2012, after having meningitis in 2011.
3. I had symptoms since: February 2012, when I began to lose my eyesight it got real quickly.

4. The biggest adjustment I’ve had to make is: Not working and making an impact in my community.

5. Most people assume: My surgeries at John Hopkins “fixed me.” This is something that is a real hot spot for me. Something so complex has no easy fix!

6. The hardest part about mornings are: Learning whether or not the day is either going to be manageable, or excruciating.

7. My favorite medical TV show is: Grey’s Anatomy (since episode 1). Though I don’t understand how this has anything to do with my illness.

8. A gadget I couldn’t live without is: My iPad. I can’t look at a computer screen without a multitude of issues.

9. The hardest part about nights are: Waking up in extreme head pain and never going back to sleep. Insomnia stinks!

10. Each day I take _ pills & vitamins. (No comments, please):I do not use many meds. I have only one RX I cannot function without, and the rest are vitamins and minerals. Pain meds are a very last resort that I rarely use (and they usually don’t touch my pain so why pollute my body.) I have other PRN meds for nausea etc… I’ve tried a variety of meds, but they just do not work.

11. Regarding alternative treatments I: Have tried to have several different alternative approaches (acupuncture, massage), but nobody will treat me because of my disorder. They believe it will open Pandora’s box…isn’t THAT fantastic? Hypnosis is the only thing I do on a regular basis. And, yes, I’ve seen some benefit.

12. If I had to choose between an invisible illness or visible I would choose: This is the most stupid question! Why would I want either?

13. Regarding working and career: I am frequently pissed off that I am disabled. I loved working and enjoyed making a difference. Now I often feel aimless. It’s hard to come to the realization – that part of my life is over.

14. People would be surprised to know: I lie a lot about how I am. I am in pain all of the time! I mean ALL OF THE TIME. I function well at a 4 and you would never know it. Sometimes I reach 7 or 8 and still manage to hold it together. My issues have also created a level of anxiety I never had before.

15. The hardest thing to accept about my new reality has been: Missing out on life…I hate being in my home so much.

16. Something I never thought I could do with my illness that I did was: Function LOL! (If you had told me 10 years ago that I would be dealing with all of this I would have said “kill me now.”).

17. The commercials about my illness: What?! There are no commercials because it is a rare disease.

18. Something I really miss doing since I was diagnosed is: Going out! Being at a party among friends.

19. It was really hard to have to give up: Being the social person I was before I got sick. (I also miss the occasional glass of red wine!)

20. A new hobby I have taken up since my diagnosis is: Journaling and writing. Someone gave me a fantastic insomnia journal that I adore! 

21. If I could have one day of feeling normal again I would: Do everything I could possibly do in that one day!

22. My illness has taught me: That I have some of the most amazing people in my life. It’s when things are most difficult that you learn the meaning of true friendship. On the flip side – it has also taught me what people are full of crap! I have NO patience for trivial BS (And I’ve been immensely surprised by the ones who put unneeded stress on me and my family).

23. Want to know a secret? One thing people say that gets under my skin is: (The same as everyone else with an invisible illness) “You don’t look sick at all.”

24. But I love it when people: I had a friend say to me “I know you feel so terrible, but you need to know you look beautiful today.” Such acknowledgement meant the world to me! She deserves a medal!!!
25. My favorite motto, scripture, quote that gets me through tough times is:   ~Elizabeth Edwards
26. When someone is diagnosed I’d like to tell them: I’d like to change diagnosed to struggling…I would like for people to know there ARE individuals who understand! Pain and illness drive you insane some days! I lost a friend to suicide and we often talked about struggles we both endured daily. She was brilliant and amazing, and I wish she had shared her struggle more with me. I wish I had known she felt so helpless.
27. Something that has surprised me about living with an illness is: The strength I truly have within me. I’ve always been stubborn, but pushing through takes it to an all new level. I always thought I was on the weaker side, and I learned I was incredibly wrong about myself.
28. The nicest thing someone did for me when I wasn’t feeling well was: There is just no way to mention one! I am fortunate beyond belief.
29. I’m involved with Invisible Illness Week because: People just do not understand what they cannot see. People make assumptions that just are not fair.
30. The fact that you read this list makes me feel: Like I am understood just a little more…

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Timehop Gratitude

I love how Timehop pulls photos from over the years and throws them back at you. I am often amazed to see my girls from five and six years ago! Time truly marches by ever so swiftly.

Much of the time we have great laughs at pictures we completely forgot…hairstyles or situations give us a lift…it’s a little photo story reminder of our lives. Today it was all about gratitude and compassion. When I am covered in worry and anxiety, it is incredibly nice to be jolted back to what really matters.

Timehop, thank you for the reminder!


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2015 · 5:26 pm