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

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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When Words Are Not Enough

Pray.

God. I am broken. I am weak and I am Your child. I come to You with the deepest need and with complete humility. There are things in my life that can only be soothed from Your goodness and mercy – from Your grace and love. As Psalm 139 reminds me – You know me – and I am comforted.

I know God is always there when I stumble, and when I am at my lowest point. Many times no words can flow from me that make any sense, and all I can do is say a prayer. Lord, hear my prayer.

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The A to Z Summer

The end of summer is in sight, and unlike many of my contemporaries I hate the return to school. Our summer days are not always filled with rainbows and unicorns (after all she IS a hormonal tween),  but I soak up every moment with my daughter. 

I begin to feel the pangs of dread come over me the moment I see the “Summer Fun” sections in stores give way to “Back to School” madness. Ice cream makers are replaced with miniature dorm room coffee machines, and bubbles are removed to make way for bright yellow No. 2 pencils. As the school supply lists begin to appear in emails I find that I just want to hit the delete button as fast as they surface. These last weeks always make me take stock in the past months, and survey the quality time spent together.

Nothing has been more real to me than middle school staring me in the face. A friend commented just the other day on how she sees the teen trying to break through in my 11 year old. Of course, being one of the oldest in her class, she is mature for her age and also carries the influence of a much older sibling. I still see the warm, compassionate, young child inside that exterior comprised of eye rolls and “Mother” comments. When, at the end of the day, she still wants to curl up with me I gladly sink into that familiar position without pause. 

I tried hard to live this summer with intention and awareness knowing our world is going to change as her life gives way to middle school, activities, and friendships (as it should). Together we created the A to Z Summer in an effort to do some fun things together. The letter activities did not have to be something epic in nature as much as it was time spent together. 

We went on Adventures and enjoyed several days at the Beach. She had some great fun at Camp, and reached her Swimming goals with Meets and dropped times! She was productive with her Reading lists, and volunteering with Fifth Street Ministries. There were even some quirky experiences like the Livermush Festival…yes, there is such a thing! Together we perfected our Pound Cake recipe, and sampled homemade Ice Cream at an interesting drive-in. You get the picture – there are 16 more letters represented (and some letters even have multiple activities). We have just a few more letters to mark off our list before school begins. Several of our friends are making suggestions for the more difficult letters, and we are certainly open to suggestions! We’ve contemplated awarding a prize for the more creative suggestions.

Middle school is breathing down our necks, but I can say that our summer together has been filled with quality time. As I begin to purchase all the back-to-school supplies (including a calculator bigger than her head), I’m going to be fulfilling the remaining letter activities. In just a few weeks the house will be silent through the day, and full of chatter in the evenings.  The yearly rat race begins with homework, swim practice, youth group, and social fun. I imagine I will see glimpses of the teen trying to break through, but for now I hold tight to our A to Z summer before the madness begins.

    

 

(I know she’s a math whiz, but does she really need a college level calculator in 6th grade?!)

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