Tag Archives: brain surgery

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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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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“Fray”

The WordPress Daily Post photo challenge spoke to me today. I am the epitome of the word “fray.”

I am both noun and verb. I am fight and struggle, as well as a sight that could frighten most anything away.

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Last week I had two brain surgeries in five days. I spent a large part of the week in ICU, and now I can finally function out of the bed. In my opinion “fray” is strength and filled with positive meaning. I will overcome this with time. These are my battle scars.

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Regrouping and Returning

I’ve been in the blogging world both personally and professionally for many years. I’ve attended conferences and helped other bloggers work to reach their potential. One thing you will learn early on is that you WILL lose readers, contributors, and sponsors alike if you fail to post new and relevant information. Forsaking your blog is like death to a blogger or an organization who uses blogging as a tool for business.

With good reason I left my blog in the dust. I had two spinal surgeries then I had a little thing called brain surgery. Of course Three Gals was the last thing on my mind on the long, arduous, and often exhausting road leading up to the surgery. I mean – come on – I had my head shaved and holes drilled into my skull. I was left with railroad tracks staples , a device in my brain, but ultimately a new lease on life.

A while back I posted about my illness, and from that point everything went south. Essentially I had permanent damage done as a result of meningitis, and from there I set out on a long road of trying to figure out what happened. I won’t bore you with the details, but I will say I was diagnosed with an extremely rare condition where my brain acted as if it had a tumor (even my brain has tendencies toward the dramatic flair). After months of severe pain and high intracranial pressure, brain surgery was the only answer.

I’ve been on disability (thank the Lord for disability insurance) and I have been trying recover. Over the past weeks I have reached a proverbial fork in the road – do I struggle to continue on as I was before, or do I accept a new normal in my life? I will admit I was fighting the thought of never being the same until it dawned on me to just accept what limitations I may have. My limitations do not have to break my spirit the way they have broken my body. Don’t get me wrong – there are people in far worse shape than I am in, and those who have much greater struggles. My reality is that body is awkward at times and I find myself feeling as if I’ve been shot from a canon, I have some memory issues I am working to overcome, and I may always experience a level of pain I was never used to having. I’m OK with that. I have a remarkable support system, and those who are here to help if I ask. Bottom line – I am grateful.

One of the issues I deal with is that my brain seems to get scrambled after being on the computer for more than 15-20 minutes, so I am rarely on the computer anymore. I thought about closing everything down and letting go.

Shameless Apple plug – Thankfully the iPad does not present the same issue (I’m guessing the retina display), and I am trying to see what I can do with this awesome little device (I must remind my family how thankful I am for this awesome gift). Working with my blog may even be a form of brain therapy according to one of my doctors.  So I’m keeping my fingers crossed that Three Gals may help my wires uncross.

I am fortunate to have many readers, followers etc who travel to this site – thank you for being patient and understanding (and if you subscribe via email – surprise!). Hang in there with me as I regroup and return.

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