Tag Archives: pain

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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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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Filed under Brain, Sally, What?

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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Filed under Brain, Life, Sarah

Growing Pains

There are times when I am transported back to my days in college. I can get lost in the thoughts and memories and feel like I am almost watching a movie. Sometimes I hear a song and it is as if I am right back in 1988 at a party sipping on some God awful cheap beer, or I have a flashback of sitting in a classroom discussing Faulkner. It is so crazy to me that it has been 26 years!

After my sophomore year I transferred from my small college in the mountains of North Carolina to a larger school in Charleston, South Carolina. It was a secretive process really. Over my spring break I visited my best friend at the Citadel and fell in love with Charleston. I had become somewhat restless with my small college and I found myself wanting more. College of Charleston was the more I needed. I applied to the college without telling a soul. It was not until I was finished with the existing semester and heading back home that everything fell neatly into place. Though I loved the first two years of college at my tight-knit school, I knew I had to expand my world. I took a huge step out of my comfort zone and set out to do things that my 20 year old self thought to be vitally important.

I moved to Charleston on my own the summer before school resumed. I did not know anyone and arranged to live with complete strangers in a home near campus. I moved into the house months before my roommates – hell bent to be on my own. It was scary and it was amazing. I was twenty years old, in a great southern city, and I could spread my wings like never before. I spent days on end exploring the city on foot and by bike – getting job applications and walking through what was to be my campus. The feeling of freedom was inexplicable.

The summer of my 20th year was the time in my life where I truly changed the most. It was then that I became a Charlestonian and not just someone tied to my childhood home. I worked hard and I played hard. I also made mistakes and struggled in ways that would teach me more than any textbook. It was also the summer that I knew I would remain in Charleston for years to come and it led me to the path that would bring about my daughter.

I am thankful that my parents did not hold me back and they helped me to achieve my goals. They insisted I had some skin in the game in the form of a j.o.b., but I was more than ready to live and work in Charleston. They certainly could have approached things much differently since I was not exactly open with my thoughts in the beginning. As parents they just knew it was time to let me go be my own person. Though I needed them both emotionally and financially, I needed to create my own path more. I’m also fairly certain my mom did not want an unhappy 20 year old at home bitching and moaning the entire summer as well.

More than ever I have been transported right back to those days because I am now on the other side. I am feeling the growing pains all over again, though the pain I feel is entirely different. Now I am having to let my 20 year old daughter go and do the things she feels to be vitally important. My daughter and I are in the EXACT same place as I was with my mother back in 1990. We are all the exact same ages – it’s as if the movie was paused and suddenly new actors stepped into the roles.

Not long ago I was visiting my daughter in Raleigh when I brought up the conversation about summer plans. I found it interesting how the conversation quickly changed, yet there were subtle hints that told me she had something brewing. It made me wonder if my mother might have had some inkling about my discontent when I began making plans (after all she swears that nothing ever got by her). Oddly enough I understood my child’s buried restlessness and hidden desire to not return to her small hometown. In her eyes I saw myself all those years ago.

Apparently spring break of the sophomore year is the time we choose to make major life decisions. “Mom, I’ve decided to live in Raleigh this summer.” She had carefully laid plans and made arrangements. At that moment I understood what my own mother must have felt – the pain of realizing it was time to let go. Though the pain of giving your child the wings they need to grow is so suffocating, the pride of knowing they have reached the point you worked for all their lives is far greater.

The biggest difference is that my child is doing more significant things than I set out to do! Isn’t that what we truly want as parents? As a Chemical Engineering student there are more demands and challenges than I ever experienced. She will be focusing on a difficult class while participating in an opportunity of a lifetime. While I spent my time working at the GAP and Charleston Marina, my daughter is going to be doing DNA research.

My wish for my 20 year old daughter setting out on her own is that she works hard and does not forget to play hard. That she also learns from mistakes and has the struggles that no all-nighter in Hunt Library could ever provide. One day I want her to be transported back to her 20’s and feel the same monumental feelings I feel.

My growing pains are much different 20+ years later. It’s the pain of an empty room for the first summer ever, and the profound absence that my summer will have. Oddly enough I also have that familiar feeling of excitement and anticipation though my daughter is now my vessel. It’s going to be a unique journey and learning experience for us both.

MB, just try not to set off the smoke alarms making your very first meal on your own. Unfortunately my first evening on my own involved frightened neighbors and the fire department.



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Filed under College, Life, Mary Beth, Sally