Category Archives: Sally

The Most Excruciating Pain

This weekend I was hit by a bolt of lightning! My brain likes to surprise me with things like this. Just when I think I have made some serious progress it likes to remind me who is really in charge!

The bolt has hit me before, but it has been well under control with meds, and took about a two year hiatus. I was going about my day and had a wonderful massage. I kept telling everyone that it was probably the best massage of my life. Who knew something so amazing would open the gates of hell? That massage triggered what is often called the “Suicide Disease.” It is called this because many of those impacted have either committed, attempted, or thought of suicide. During my massage the nerves were triggered and within an hour I was feeling the shock waves. It certainly was not the fault of my massage therapist (who by the way has helped me with my issues immensely), it is just more of my damaged brain reacting.

Trigeminal Neuralgia is described as the most excruciating pain known to humanity. It is characterized by episodes of sudden, explosive severe pain along the trigeminal nerve. It is typically limited to one side of the face and impacts a few different regions. I have atypical trigeminal neuralgia that sets up camp in my right jaw, teeth, gums, and lip and is relentless. I can barely talk or eat when I am hit like this. It may sound questionable to those who have never encountered this disease because it is certainly not common. You may want to brush it off and even scoff at the claim that it is the worst pain known to humanity. I’ve had children, meningitis, two spinal surgeries, three brain surgeries, suffered many issues as a result of the latter, and I can tell you it is an accurate claim! Medical professionals made this claim – not some person randomly attaching it to TN. 

Unfortunately, this weekend was an attack like no other. I have never experienced it so profoundly. Not. One. thing could help me during this attack. I was buried under a mound of heating pads, pain meds did not make a dent in the pain, and I was left writhing and crying for two days. It would not let up so my husband, mother, and doctor said I was left with no choice but to head to the ER. 

The ER doctor took one look at me and immediately ordered morphine and a mixture of other meds. It is important for those of us who face a beast like this to be understood and to feel true compassion. I am so thankful for doctors like the one who cared for me! He knew quite a bit about TN and was fully aware of the level of pain that presents with flairs. He even laughed and said, “I’m not even going to ask you to give me your pain level because I already know what it is.” My visit to the ER was exactly what I needed to do, but I am left with some after shocks even as I type. 

I’m sharing my ordeal – my mess – for no reason other than to share a message! Here it is: If you know someone dealing with TN give them a big hug! Let them know you are there for them when they need it, and let them know you will help. Like me they may need soft foods, or soups until the beast releases its grasp. For those of you who suffer YOU ARE NOT ALONE! Do not give into the demons that tell you to give up. Find a support system who will be there to help. I know I am damn lucky to have mine! 


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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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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

All Aboard!

My anxieties are at an all time high, and it’s more than just an overwhelming feeling now. I never had anxiety issues in my life, but brain surgery certainly changed that fact.

For a while my anxiety just snuck up and tapped me on the shoulder as if to say, ‘Pssst aren’t you worried you are going to be hit by a blinding pain while alone in Target and just fall out?‘ I have always been able to push that voice aside and rationalize my fear as normal for someone in my shoes. I simply tell myself it is ok to feel that way, and all will be fine (plus I always have a plan if all is not fine).

A person cannot suffer the way I do, and experience issues like mine without some form of anxiety… My doctor even says it’s common and expected. I have gotten really good at managing any thought that enters my head by simply acknowledging its existence as  normal. I can cope just fine…like I have for the past several effing years!

Lately it has been less of a shoulder tap, and more like a pachyderm sitting on me. I’m physically feeling my anxiety levels rise now. I know it is because of mounting issues returning. I can fully understand and pinpoint the causes, but I cannot prevent the physical manifestations any longer. Mentally I get it, but I cannot convince my body that it is under control. I have had to try incredibly hard to keep breathing under control, and to steer myself back to physical comfort (I won’t use medicine). The point is – I am fully aware of what is happening and why! So why won’t this pachyderm leave me alone and quit sitting on my chest?

Everything happens at once. I hate the idea that I have to go back to Hopkins, and that more problems need addressing. It’s obvious that answers need to be uncovered for me to simply function on a remotely normal level (that pill keeps getting harder and harder to swallow). I help myself by working on a game plan and preparing for the next phase…I am a control freak after all and must have a plan A, B, and even C. I feel better when I have some navigational control of this train load of crap.

I truly believed this chapter was behind me.

I have begun to wonder if my keeping the ole’ chin up, staying quiet in an effort to not burden others, and internalizing much of my experiences has contributed to the rise in anxiety. Writing about it seems to calm me a bit, and I feel as if someone is remotely understanding out there. All I know is – to quote my mother – I am a train wreck.


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My Pain Has A Personality

I’ve hit another road block…bump in the road…hiccup…setback. Call it what you want – it sucks (I hate that word too!).  After spending the day with my neuro we tried to pull together yet another plan. 

When people ask how I am the automatic response is “Okay.” People close to me know the truth and know that “okay” is far from my reality. My noodle is so messed up that I cannot even begin to explain the multitude of issues. Why even try? So, I say “okay.”

I have some form of head pain at all times. People cannot grasp that…ALL. THE. TIME. I may look okay, but there is a war going on inside. On a good day I have a pain level around a 4, and it may increase throughout the day. If I am lucky it lingers there all day. Some days I reach a 7 or 8 and work extremely hard to hold it together. I wake up with pain – I function daily with it – and I go to sleep with it. A large majority of the time I am awakened by it as well. Insomnia is one of the worst issues I face right now –  insomnia as a result of monumental pain no less. The nighttime always seems to be the worst. I often go days and even weeks with no relief. 

Take medicine, people say… Don’t suffer, or That’s what pain meds are for are common things I hear. It’s not that simple. There are no medications that have worked for me. Pain meds are a crutch for people and can cause so many worse things in the end. Trust me – they aren’t the answer. Medications can be thrown at the problem, but they come with severe issues often. When you’re treating the brain it can get kind of scary. Ask me what I learned about Stevens-Johnson Syndrome as a result of one med. Fun stuff. Meds are great if they work.

Recently my intractable head pain has taken on a new personality. Go ahead and laugh. It may sound weird, but my pain has a personality and it adapts to situations. Pain gets so bad that it begins to shut down things…like my vision. Pain will not be ignored. It wants me to be aware that it is there and setting up camp in my brain again. So now it does things like create hemapalegic issues to frighten me. The stroke-like symptoms are worrisome and debilitating. Try making dinner for your family when you can’t move your arm. Pain is unpredictable and unrelenting.

I’m on that rope and clinging to the knot at the bottom now. I do and try most anything to lessen pain’s grasp. I love my essential oils because they can give me a small window of calm. I love my bed and surrounding myself in pillows and comfort. In a few days I am going out on a limb and trying hypnosis. Yep, I’m there…swinging on that rope. I’ve read quite a bit on hypnosis and the success it has on chronic pain issues as well as insomnia. The psychotherapist doing it is also well-versed on acquired brain injury and disease. Who knows…maybe I will bark like a dog when someone says hello. All kidding aside, maybe I will see even the slightest relief. 

A fellow Hopkins patient had great success with a medical device that generates micro-impulses and neurostimulation to the trigeminal nerve. It ultimately produces a sedative effect. In a few days I will sample the device to see if there is any hope for me. If not, there is a last ditch effort that we have in our back pockets.

One of the theories is that my brain acts similarly to phantom limb syndrome (and I do see the humor in that statement). Over the many years of illness and surgery my brain has adapted to the pain process. It does not know how to be normal (again…it know, it’s funny). It’s as if my brain needs to make a new connection. A reset button needs to be hit, and my brain needs to CTRL, ALT, DELETE itself. 

I’ve learned so much about myself and all of this crazy mess. I look back and cannot remember “the before.” I told my mom just yesterday that I was just living life without a care, and then this colossal thing happened.  This may be your way of life now is NOT something I can easily accept. So if you see me and ask how I am…call me out if I lie and say “okay.” Tell me you know that my struggle is real and there. Ask me what that pain bitch is doing to me today…I’ll love you for it!   

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