Tag Archives: brain

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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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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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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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

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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Sick and Tired

There are things that seem too much to handle sometimes. I am told I am a trooper – I am strong – I am admirable. The truth is I am weak and  I. Am. So. Tired.

I’m tired of being held hostage by my illness. I am tired of the unrelenting pain. I am tired of trying to constantly explain so much in order to be minimally understood. Most of all I am tired of what all of this does to my family.

The most empty feeling I am left with is when I am sharp-tongued and harsh with the people I love because I am suffering. What is this doing to THEM?

I suddenly became paralyzed with grief at the thought of altering who my child becomes. So much of her young life has been filled with worry about me, and seeing me so broken. I have been absent for many things, and when I am involved it is a struggle. Her eyes often meet mine and mouth, “Are you okay?” What has my being so ill done to her little heart and mind? Has all of this crap damaged her? The worst part of it for me is that I can never get the time back. I can only focus on what is ahead and what I can do from here.

What can I do from here? I just do not see an end in sight. After taking some great steps forward – I am back to a place I didn’t want to be. Lost. No answers.

The past several days have been a deep struggle. I am confused and frustrated at the moment – all because of the pain and the unknown. I search for ways to keep my mind off my body, and today my mind just keeps going back to my little girl (who is suddenly not so little anymore). I pray and hope and beg that answers come, and pain is gone or fleeting. Though I may get upset and down, I keep telling myself something good has to come from all of this! I am waiting on the good. Oh God, I need some good!

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What I’ve Learned

Over the past few years I have learned a lot about myself, my strengths, my weaknesses and my complete idiocy.

It’s no secret that I’ve had another brain surgery…hell, two more! I honestly thought I would sail through this latest installment. Boy was I WRONG. I suppose my brain simply forgot. My initial brain surgery was like childbirth in essence – you just block out the pain. Perhaps it was two in five days that did me in this round, or the adverse reaction to anesthesia, or the heavy sedation.

This has by far been the most difficult road I have yet to encounter. However, I’d like to think I managed to do so in true Sally style. Most everyone knows I find humor in even the most stressful situation. As with anything lately, I have learned a great deal from my latest experience.

There is no being modest. Especially in ICU! Hospital gowns are thrown around and monitors are everywhere. Your everything is shown to just about anyone who slides the door.

Bedpans are of the devil. I begged to be allowed to get up, but there is no getting up with an exposed brain and a bolt sticking out of it. My entire body shut down at the mere sight of those vile pans – thank The Lord for cold cloths! Bedpans are humiliating business.

A person should not be held accountable to any conversation or action while heavily sedated. I’m pretty sure I made promises to both my husband and mother that I will never keep. According to one eyewitness report, I showed my ass (in more ways than one) to one of my doctors. Although I made him laugh, I’m pretty sure my drug induced state removed all filters. I must remember to apologize at my follow up appointment.

NEVER, under any circumstance, is it a good idea to whip out the iPhone! I’m sending a message to all spouses who are told that it will be fine to hand it over to their medicated loved one. The amount of pictures that I thought would be “neat,” or text messages to best friends that seemed appropriate are horrifying. Nobody needs to know just how full of glee you are that you finally got a potty chair!


Run any thought you want to discuss with hospital staff by a loved one before opening your mouth. Every single person that walked through my door – doctor, nurse or otherwise got an earful on how surprised I was about the amount of pain I was in at the time. One completely awesome resident actually looked at my husband and mother and said, “Is she being serious?! Does she not understand what has been done to her?” Of course I was serious – I am STILL horrified by the amount of pain I was in and what remains to this day. There were several other things that I exclaimed in the presence of hospital staff that might have been avoided had I run my thoughts by someone BEFORE saying them!

I am abundantly grateful for my entire team of supporters. There are no words to express how amazing every single person has been. My doctors are some of the most brilliant people roaming this Earth! My nurses have been rockstars and work harder than any people I know. My family. Gosh – I can’t even begin…they kept me going when I didn’t think I could go. They made me smile (at all costs), and they showed me the true meaning of family.



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