Image courtesy of adamr at www.FreeDigitalPhotos.net

Dear Readers,

It has been quite some time since I had my last post – and I apologize. I am sorry because I enjoy writing to you and having all of us share with one another our struggles with our health or whatever issues changed our lives beyond our control.

I had to take a break from the blog because my multiple sclerosis and
trigeminal neuralgia were worsening, and managing my diabetes is more
difficult than I imagined. However, I thought it would be a short break – until
Fall 2012. But here we are at the end of April 2014, and I am still out. One big
event going on is I have to move in the beginning of August. You all have moved before and you know how
demanding, stressful, and draining it is. Therefore, this is a big deal for me.
Also, I may have to have a procedure. Don’t dismay, my friends. Even though this is going
to be a bumpy road, but my life is changing BIG TIME – but it’s a change for
the good.

One very good surprise I had, is that people are still coming to the website and
commenting on the blog! THANK YOU!!! This means so much to me! Therefore,
I’ll check here for comments and answer them as I can. My goal will be to
answer them my Sunday midnight. You can also reach me through the contact
section. Does that work for you all for now? As soon as things get a bit stable, I’ll be back and post consistently. Until then, beginning this summer, I’ll
do one blog post a month. If there is something you would like me to write
about to you, I would love to hear it! I’m game for just about anything.

As you know, pity-parties are not helpful – support, smiles and slaps on
the back (not too hard, though) are what help each of us! Upon reflection, it seems we don’t really grow and change too much during the
happy times. We appreciate and are thankful during those times. We change – or
at least I do – during life’s challenges, obstacles, and even times of pain. When life hurts, my first reaction is not to be all happy and thankful for all this crap. The funny thing is,
though, each time I’m in pain, struggle to move around, or spend days in
bed, I know I’m building the muscles of my soul. Don’t get me wrong. I get so
tired – fatigued. But the hard times don’t last and they make me stronger to endure the
next time they come around. The same is true for all of us. I know each and
every one of you can tell of a time when things were so damn hard that you
didn’t think you would endure. But you did. You didn’t just survive, you
thrived (as a good friend, Lara Britt, wrote).

My first summer post will be towards the end of May. Between now and then, I would love to hear how you all are doing – what struggles you have and any techniques you have learned to manage them. For example, my move is a big life change for me as I will be moving away from my current care-givers – my parents and becoming more independent. This move will help psychologically, but there is so much to do. To help me not get overwhelmed, I wrote out a big calender on poster board and started to write all the things I have to do between now and then. I only put a few things a day and for the week, anticipating that I will have some bad MS days. I also am learning to change my self-talk from “I have got to pack 4 boxes today,” to “I will try to pack at least one box today and maybe three. The rest I will do tomorrow or the day after.” In other words, make my schedule more flexible. Of course, things like Dr. appointments are not as flexible and I may go without showering. I am learning to change my expectations. 

So, let me know – and each other – how you are managing or not managing. We’ll keep things here flexible! I’ll keep you posted much better than I have these last several months. Until then my friends, be strong and know you are not alone on this path of life.

All my best to you - 

Monique

 This is a CELEBRATION post! Celebration for “Bends In The Road” and celebration for 23 other people & their blogs!  Several weeks ago, I received 3 blog nominations and 2 awards!!! I phoned my close friends and exclaimed, “I won an award! I won TWO awards!” and started crying. I thought, “I’m not worthy of these. There are better people who have been blogging longer than me.” Then I paused and wondered. Maybe that’s why these awards exist: to encourage us to be committed to our blogs. I had to take a break from my blog work for health reasons. Since the day I decided to blog, I was afraid my health would interfere with my blogging. But it happened and life continues. I enjoy this website and you as my readers. I really do! So, despite this recent break in my work on BITR, I’m putting my best foot forward by giving thanks to other bloggers, many who have inspired me.

The Liebster Blog Award

What’s amazing about the blogging community is there is a pay-it-forward mentality. A brilliant example is Kristen Lamb and the WANA community she is building for people of the arts, including writers and bloggers. She created this community because she wanted to help people learn from her experiences as a writer and freelance editor. She is paying-it-forward.

Bends In The Road was nominated for the Liebster Blog award by two people (Two! Can you believe it?): Kelly Williamson and Jennifer Chow. Jennifer uses her Chinese heritage to create connections between ordinary life and Chinese words. Kelly’s blog is a way to communicate many of her life changing moments. I received the two nominations within 4 days of each other! It had been a rough month for me since it was my first month blogging and doing the MNINB April Platform Challenge hosted by Robert Lee Brewer. We had 30 days of activities, blogging, joining social media groups, connecting with other bloggers, etc. That month I had multiple sclerosis flare-ups. What made the month worthwhile was I met a group of writers (The #MNINB April Platform Challengers). I would not have met these people if it had not been for MNINB. I continue my relationship with many of the writers through a group we have on Facebook, Goodreads & the website that we are creating.

Let’s get to the good stuff. What is a Liebster Blog award? Liebster is German for “beloved.” In a sense, a blog nominated for this award is a blog “worth watching.”

Rules for The Liebster Blog Award:

1. If you are nominated for the award and accept it, then you have won!
2. Thank the person who nominated you by linking back to their blog.
3. Nominate 5 blogs with less than 200 followers.
4. Let the nominees know by leaving a comment on their blog.
5. Add the award image to your site (use an image widget to place at bottom/side of blog).

I thanked both Kelly and Jennifer many times to let them know how appreciative I was – and still am. You can see by going to their blogs and on my Bends In the Road Facebook page. Jennifer and Kelly, you helped me believe in myself at a time when I was struggling.

And the nominees are…

• Cynthia Stewart’s blog: Etherealyric – Musings and meditations of a spiritual wonderer. 
• Natalie Proudfoot: Proudliving – A shared community forinspired living.  
• Samantha Stacea: My Paranormal Pen. Samantha writes on the mysterious. 
• Brooke Ryta: So Whatcha Think. Brooke writes about various things, especially writing. She also has a book coming out by the same name.
• Amy Pabalan: Take Aim – Playful Ponderings.  Writes poems & about food, archery & more.
• Meena Rose & Claudsy: Two Voices One Song. Two friends taking on the world over a cup of tea

Show them some love by visiting their blog and leaving them a comment or two!

The Versatile Blogger Award

I was nominated and awarded The Versatile Blogger award by Esther Bradley-DeTally. I thanked her profusely on her blog and on my Facebook Fan Page.  All three of these awards occurred around the same time. As I edit this post for my blog, these awards fuel my enthusiasm!

Esther: Thank you for believing in me and supporting me in my writing over these last few months. I anticipate working with you next month!

The Versatile Blogger Award Rules

1. Nominate 15 bloggers for the award.
2. In the same post, add the award; (use an image widget to place at bottom/side of blog).
3. Thank the blogger that nominated you, and give the link back to their blog.
4. Share 7 random things about yourself.
5. Include the rules in the post.
6. Inform every blogger that you nominated, of their nomination by leaving a comment on their blog
7. Inform bloggers to leave their blog information at http://versatilebloggeraward.wordpress.com/vba-winners/

 7 Random Things About Monique Liddle

1. In January 2003, it was a snowy winter in Indiana. My friends and I would go for long Saturday runs, with temperature ranging from -11 to -5 degrees Fahrenheit! We would have a pow-wow regarding how many layers and what we would wear for each layer. I was IN LOVE with the freezing and seep snowy runs! They were invigorating and breathtaking. I had my best runs that January and February.
2. For my 30th birthday present to myself, I visited my father’s side of the family who all live in England. I spent days in Oxford with my uncle and his family, around London with my aunt and her family, and up north in Middlesbrough where my Dad and his siblings lived. My father does not speak much about his childhood. So, I learned a lot about my father’s family, especially about his Mum and Dad and also about my father.
3. One of my all-time favorite things to do is swim under water! It’s like being cocooned – an escape. I don’t mind if I’m swimming in a pool or the ocean. But I don’t favor swimming underwater in murky lakes where I can hardly see anything except for greenish sediment water. Ugh!
4. The first time I remember seeing my Dad cry was when we lived in England. The ambulance had just left with my Mom and my 3 year old younger brother, because he had a severe asthma attack. I was shocked to see my strong Dad become human like me.
5. When I was a Girl Scout, our troop went out for dinner to a pizza place for a reward. There was a jukebox set against the far wall. At that time, Sheena Easton’s song ” The Morning Train” was very popular. Some of you may remember it: “My baby takes the morning train. He works from 9 to 5 and then, he takes another home again to find me waiting for him.” One of us had some money and we had 4 songs to choose. We chose “The Morning Train.” All 15 of us sang that song 4 TIMES! We especially loved the chorus and would sing proudly and loudly! We sang as we danced and as we left the pizza place. For Christmas, the Troop leaders gave us all 45′s of that same song!
6. I adore orchids! There are thousands of varieties of them. I enjoy visiting them at indoor gardens, seeing miniature ones that look like flowers for fairies, and seeing the “Slipper Orchid.” I pretend that if I had a foot that small, I could use the flower for slippers! The colors of orchids run the spectrum and are brilliant! While others, seem to fade into their environment.
7. I often envision myself living in a cottage on the outskirts of a quaint medium-sized town. There are many flowering trees in the yard. I have an office with French doors that lead out to my back yard with an herb and vegetable garden. There is a medium-sized white desk in the center with built-in bookshelves on all the walls. In that place, hard-work and creativity exist together.

I hope you will visit the blogs of Jennifer Chow, Kelly Williamson, & Esther Bradley-DeTally. Don’t forget to visit the blogs I listed above. They would be honored by your presence!

What are some blogs you have visited lately that you enjoy? Is there a particular blog post/story that  you think is a MUST-READ? Let us know so that we can visit those blogs that are new-to-us!

Anne Kimball

James Kimball

With the help of my other sons, we righted the table. Rolling fruit was gathered and washed. Jagged ceramic lay in pieces on the floor. The dish, a gift, looked broken beyond repair.

I gathered the fragments together and began placing them in a sack to be discarded.

The dish wasn’t the only one broken. My son, full of teen angst and layers of past traumas, had flipped this table over in a moment of rage. Not a rage over the losses in his life or the hurts he’s endured, but over the latest insurmountable injustice. He didn’t get the seat he wanted when it came time to watch a movie, and this insignificant precipitator had escalated and swollen till its enormity could not be controlled.

Sweeping up the broken bits too small to be gathered by hand, I wondered,

Could I fix my child?

Am I arrogant to pose the question?

The Logical Me knew well enough that you can’t undo the hurt caused by years of neglect, drug use, lead paint, institutionalization, and abuse physical, mental and emotional simply by gifting a child a room of his own, nice clothes, a pool, and a family vacation down the shore.

But Melodramatic Me fantasized that by showering him with our unconditional love and support (and a good dose of professional therapy), maybe, just maybe, he could turn whole again. That if the light of our love could seek out and illuminate the darkest recesses of his hurt, it would be enough to negate all that happened in his past.

Could love, support, and stuff eradicate a person’s traumatic past?

Listening to the muted rumble of him trashing his room upstairs, it was looking as if the answer was no.

Still, I had to believe that all this drama is part of the healing process he must go through to recalibrate. He was functioning just fine in his old life until I came along and opened up his wounds. Although it broke my heart whenever I thought of him in his past life, he probably barely gave a thought to his scars, his lack of a family. A pack of rowdy boys roaming the streets and doing the things unsupervised boys do served fine as a family. And scars were just that, scars. They had long ago healed and were nothing more than part of his physical terrain. He gave them no more thought than he would one of his freckles.

A person could walk along through life impaled by a staff. Perhaps once in a while, if he weren’t careful, it might become a problem. It might hurt if he got it caught on something. But if it spared organs and arteries, a person could function, certainly. Remove that staff, and now you’ve got exposed, raw, painful flesh. That wound will ache. It will heal, but it will take time and it will hurt like the dickens for a good long while. And without proper care, the gash could become worse before it gets better. Could become inflamed, infected.  Would he have been better off without me swooping in to remove the staff?  Whose needs was I serving by doing so, his or mine?

Of course this is Melodramatic Me at my finest here, but I’m trusting that’s what we’re dealing with: a case of old wounds opened up and aggravated. Every instance of loss of control becomes like a cattle prod in the bared gash. On a good day he can bite the bullet as he controls himself and the pain subsides. On a bad day he becomes a wounded, cornered, wild animal acting out in self-preservation.  When I watch him acting out in this way, it hurts.  It was like removing a splinter from the inflamed palm of a screaming toddler.  “I know it hurts, honey, but hang on, Mommy’s going to make it all better.”  If I was truly making it better, then why was I feeling worse?

I cut my finger on a piece of the shattered ceramic. I watched the blood trickle down my hand and drop to the floor, mingling with the dust of the broken dish and my tears, which had been raining down steadily. I stood and moved to the sink, and washed the blood from my negligible nick. Probably wouldn’t even need a Band Aid.

In a moment, my son appeared, standing at my shoulder.
Through his own tears, and barely able to look at me, he murmured his apologies, and then walked outside. I completed my task, then went outside to talk to him, Big Lectures beginning to form in my mind. But as I closed the kitchen door and walked into the night, I turned and found my son leaning against the deck railing, looking out over the pond and illuminated by the light of the moon. He was crying. Sobbing.

The lecture could wait. I stood beside him and reached up to put my arm around his shoulders. And we stood together like that for some time, quietly crying together.

The Kimball Family

Anne will be here today to answer your questions about parenting a child who has attachment disorder, especially Reactive Affective Disorder (RAD).  She can also answer some questions about adoption, since she and her husband have adopted 3 children.

Possible questions:

**Parents preparing to adopt are often advised to “hope for the best, but prepare for the worst”, and yet most agencies have no formal requirements in place to educate the  parents to be.  What measures could be taken to help parents prepare for life with a child who has attachment disorders or other mental health issues? 

**Could you love a child who was unable to love you back?

**When mental health issues begin to surface that the parents were not aware of prior to the adoption, do you think parents should be allowed to “return” a child, and disrupt the child’s life, even though they legally adopted the child? 

After you comment and ask Anne some questions, below are resources plus some of Anne’s blog posts on parenting a child who has RAD.

RAD links

• http://en.wikipedia.org/wiki/Reactive_attachment_disorder
• www.mayoclinic.com/health/reactive-attachment-disorder/DS00988
• http://www.attachment.org/pages_what_is_rad.php
• http://www.radkid.org/books.html – a list of books on dealing with RAD.

Anne is very knowledgeable. Let’s show her how much we appreciate her visit at Bends In The Road by hearing from you with your comments and questions. Thanks so much!

Books. They have saved me from boredom, as a child, on those incredibly loooooong trips. You know the ones I’m talking about. Whether as a child you remember asking, “Are we there yet?” Or as a parent now telling your children, “If you all don’t stop teasing each other, I’m goin’ to pull over and we’re going to sit there until I say so.” Books have entertained me from the time my parents read bedtime stories to me until the present day. Books have educated me, led me to places where I have longed to travel to, made me cry and frustrated. Essentially, books have been the mainstay of my life since I could speak my first words: “Maman.”

Why I Read

When my multiple sclerosis and trigeminal neuralgia (TN) started deteriorating, despite surgeries and medications for the TN, it turned out that I had the next six years to read because it was essentially all I could do because my pain and MS were barely tolerable. Reading maintained my sanity. I read anything: the classics, interesting vampire stories (yes, I read the Twilight series. Good, but not my favorite), historical fiction, travel memoirs, biographies, history, Shakespeare sonnets, etc.

But I didn’t read simply because I had the time. I read for many reasons:

• Temporary escape from my own reality;
• Realizing my situation could be worse;
• Fantasizing;
• Learning at my own pace;
• Helping me to learn to cope with pain and difficult times. (Books help me experiment with ways of coping other than my own methods);
• Living vicariously through others
• Strength – especially books about strong (physical, mentally, emotionally) women
• Humor – Some of the vampire books I read were hilarious like Bloodsucking Fiends by Christopher Moore or Charlaine Harris’ series on Sookie Stackhouse (which are so different and better than the HBO series True Blood);
• Length of book – This allows me to not only escape into another place, but also to become part of the characters’ lives for a while. I miss the characters when the books ended.

Some Books I Read While I was Sick: 

Barefoot Sisters Southbound by Lucy Lechter & Susan Lechter (480 pgs.)

Two sisters travel the Appalachian Trail from Maine to Georgia. And they hiked about 90% of that trail in…You Guessed It…their bare feet!! This book was a huge escape for me, and a way to live vicariously through these women. I was very outdoorsy before I got sick: trail runner, hiker, camping, canoeing, snow-shoeing, cross-county skiing, etc. Also, it was a dream of mine to hike the trail with my dog Akea. The book also was also quite amusing with odd people and creative trail names (ex: Blue Skies, Bugbiter).

Les Miserables by Victor Hugo (1,488 pgs.)

Many of you have probably seen the on-stage production. But 2 hours does not translate into almost 1,500 pages! There are NUMEROUS subplots. I didn’t read this book in college, and reading it while I was sick was a perfect opportunity. I could take as long as I wanted and discover for myself what made this book so important. Also, I have always loved European historical fiction. I got sucked into the lives of all the characters and Hugo’s understanding of how society shapes people’s lives. This book reinforced some of my own values and challenged others. This is truly the classic that this book ought to be.

The Iliad by Homer (476 pgs.)

I had some trepidation about reading this long, very old poem. However, I was so familiar with the characters and the story from excerpts, I read during high school, and movies. (You know, the movie Troy – hunky Brad Pitt! Need I say more?) I read this book as slow as I wanted and studied the parts that I wanted to study. I found help, online and through a video lecture series I rented, to help understand the subplots. This book, also, was an escapism book: it was during a fantastic time when the gods and goddesses interfered with the lives of men, the men had super-human strength, and the women were just as powerful.

Letters And Papers From Prison by Dietrich Bonhoeffer (448 pgs.)

I studied theology in college and in my first graduate degree and, thus, am familiar with Bonhoeffer. He was a German theologian during the 1920s-1945. Bonhoeffer was first detained in a prison in 1943, and then moved to the Flossenburg concentration camp because he was believed to be involved in an assassination attempt on Hitler. I have always wanted to finish this book about an amazing man and his beliefs in social justice. Reading his letters, I realized that my situation greatly paled in comparison to his and most other people in this world. He was murdered by the Gestapo by hanging on April 9, 1945 at the age of 39.

Beyond the Sky and the Earth: A Journey to Bhutan by Jamie Zeppa. (303 pgs.)

In this travel memoir, Jamie is a young writer who wants something different before she attends a doctoral program in English. So, she applies for a teaching job in Bhutan, located halfway around the world from her home in Toronto, Canada. She ends up in a small village with zero modern amenities and in a culture in which Buddhism infuses every aspect of life. Jamie (and I) were so amazed by the tranquility of the land, the openness of the people, and their joy of living. This book let me escape to another place that seemed to be in another time, and also reminded me of my values of peace and loving kindness – including accepting and being kind to my body, which I believed had betrayed me.

Let The Right One In by John Ajvide Lindqvist (472 pgs.)

A young girl, Eli, and an older man move to town in the dead of winter, in the same apartment complex as Oskar. Eli and Oskar become friends quickly: Eli the vampire, that is! They become each other’s protector, especially Eli over Oskar from the bullies. The older man that lives with Eli, serves as Eli’s helper (you’ll have to read the book to see how he helps her!). You’re probably asking yourself, “She reads both Bonhoeffer and scary vampire books? What the heck?” Yes, I do like a good vampire book – I warned you. Despite Eli’s paranormal state, she still is a strong female character who can protect herself and the lives of her friends, and kills everyone else who stands in her way. How can you not love it?

Time Traveler’s Wife by Audrey Niffenegger (546 pgs.)

This book is written creatively from the perspective of Claire and Henry at different ages in their lives. Henry has the ability to travel through time. However, he cannot control when he travels, for how long he travels or when he will return to the “present.” You can imagine the complications this adds to the lives of these two people! I adored this book filled with adventure and a beautiful love story between Claire and Henry. I read this book for the escape it provided and also for the fantastic adventure of a love story.

The Count of Monte Cristo by Alexandre Dumas. (1,276 pgs.)

Talk about the perfect novel! This story has everything: love, mystery, trickery, adventure, social satire and more! This was another literary, mid-19^th century book I had wanted to read; but definitely not in a course where I would be rushed through it. I wanted to savor this book – and that’s exactly what I did! Being whisked away for over 1,200 pages, with amazing characters and sub-plots, I couldn’t help but reflect on themes of: revenge; and how malicious actions against others and self-blame affect a person and the people around them. So much happens in every chapter, because the Count is intelligent, scheming, and creative – and bent on absolute revenge.

Discovery of Witches by Deborah Harkness. (592 pgs.)

Witches, vampires, demons, and Oxford, England? Oh yes! This one is a fascinating tale in which young Diana Bishop, Ph.D. tries everything to escape her family heritage as a witch; and at the same time searches for a powerful book that can change the world of humans and the paranormal alike. What I loved about this book was all the literary references it had, and that it takes place in my favorite city, where I have family: Oxford. This was an absolute joy to read, with a fantastically strong woman at its center and amazing other creatures – I mean characters!

  But Wait! There’s More…

The book I am reading now is Defending Hope by Natalie Proudfoot. Natalie has breast cancer and just had her mastectomy on Monday, April 30^th – the same day she became a published author with this book. Before she was diagnosed with cancer, she wrote this book in which 13 year old Hope struggles with a grown up problem: her father being sick with cancer. I just received my copy of Natalie’s book on Friday the 4^th and I just finished chapter one! I’m looking forward to reading some more during lunch. Half of the proceeds of the book will go to theAmerican Cancer Association.

I am a member of Goodreads. If you, too, are a member, I would enjoy getting to know you and seeing your reading list.

I wonder – What you do to get through challenging/troubling times in your life? If you like to read, what are your favorite books? I read for many reasons, as you read above. What are some of your reasons for reading?

I can’t wait to hear from you!

Monique!

Anyone who has gone to the hospital or a doctor’s office with pain, whether it be back pain, abdominal pain, pain in their leg, or in my case, pain in the right side of my face due to my trigeminal neuralgia, has been asked the question, “On a scale of 0 to 10, zero being no pain, 10 being the worst, what number what you give your pain?” Sometimes you are even shown a pain scale similar to the one above. How are you to answer that question? Sure my face sometimes feel it’s absolutely unbearable – “A 10! A 10! I can’t take it any more!” I cry with tears rolling down my face like the picture of the  #10 face. So I must be giving the correct number, right? But what is the pain number of a person who comes in from a construction site and has 4 of his fingers sawed off? Is that a 10 also? How can they be the same number on the scale?

My Range of Pain Using Above Scale

Since, I developed trigeminal neuralgia (TN) in 2000, my pain has ranged anywhere from a 3 to a 8.5 on the pain scale above. Over the years, the TN pain has become more frequent and more intense. For the first three years , the pain would occur several times a week to maybe a couple times a day. As my TN became more frequent and intense, I had to take incomplete semesters from my doctoral program in counseling psychology. Finally, in October 2004 after a May surgery, the pain returned in full force. I had to take time off from the program. I moved near my parents and began a series of surgeries, procedures, and pain clinics between 2004 and 2008 to at least reduce the severity and the frequency TN flair-ups. In October, 2010, I had a morphine pump implanted in my abdomen area under my right rib. As I lose/gain weight, it protrudes more or less from my right abdomen, which makes it difficult to buy clothes that fit. I will discuss the morphine pump and other surgeries in other posts. What’s important for now is that the morphine pump has improved my overall pain and has GREATLY reduced the number of meds I used to take.

In February of 2012, I was on the phone with a dear friend. I was telling her that since I had my morphine pump implanted, my facial pain (TN) has improved from an average of 6.5 – with many days of “9″ to an average of 4.5 or 5. Most of the time, my pain was not going above a 6.5 maximum. There were times when the pain was a 7.5, but not as frequently as it used to be before the morphine pump. I definitely could see a difference in my TN pain overall – and I wasn’t drugged up all the time on pain medications. I was trying to get across that despite the silly numbers, things were getting better, even though to my friends who live far away it may not seem like it because I couldn’t always talk on the phone when they called. The people who live with me see a big difference.

A New Pain Scale Comes To Town

We hung up shortly afterwards and within 5 minutes I received a posting on my Facebook timeline from my friend about the pain charts we were discussing. She sent me the link to this hilarious blog Hyperbole and a Half. In this particular blog post, Boyfriend Doesn’t Have Ebola. Probably. Allie Brosh, the blogger, also was frustrated by using the typical pain scales, like the one in the beginning of this post. This is how she interpreted it:

0: Ha Ha! I’m not wearing any pants!

2: Awesome! Someone just offered me a free hotdog!

4: Huh. I never knew that about giraffes.

6: I’m sorry about your cat, but can we talk about something else? I’m bored.

8: The ice cream I bought barely has any cookie dough chunks in it.  This is not what I expected and I am disappointed.

10: You hurt my feelings and now I’m crying!

Because of her frustration, Allie introduces a NEW AND IMPROVED PAIN SCALE!!!

0: Hi. I am not experiencing any pain at all. I don’t know why I’m even here.

1: I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2: I probably just need a Band Aid.

3: This is distressing. I don’t want this to be happening to me at all.

4: My pain is not f****ing around.

5: Why is this happening to me??

6: Ow. Okay, my pain is super legit now.

7: I see Jesus coming for me and I’m scared.

8: I am experiencing a disturbing amount of pain. I might actually be dying. Please help.

9: I am almost definitely dying.

10: I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers: You probably have ebola. It appears that you may also be suffering from Stigmata and/or pinkeye. 

Please see Allie Brosh’s blog at: http://hyperboleandahalf.blogspot.com/.

I would love to hear your comments on today’s post, especially your experiences with pain scales. Please do not hesitate to contact me on the CONTACT page, or CONNECT with me on Twitter, LIKE me on Facebook, FIND me on LinkedIn, and/or ADD me on Google+.

Monique

Trigeminal neuralgia is like lightning! Often, there is no warning sign. It comes on suddenly like electrical nerve pain striking me in the side of my right eye or forehead. The pain hits me all at once – very high on the pain scale. Then it gradually calms down – lingering. Lingering much longer than I want. Sometimes it takes 10-15 minutes for that one strike to go away. Then there may be other strikes! When the trigeminal neuralgia (TN) takes my breath away as it strikes, I have to remember to breathe, otherwise the stiffness in my body and anxiety makes the pain that much worse. “Breathe, and don’t cry,” I tell myself. Touching aggravates the pain. So does the wind and people hugging and kissing me on my right side of my face. Everyone hugs me on my right side; so, I gently guide them towards the left. If they’re confused, I say that I have severe nerve pain on the right side of my face that is made worse by touching. If you look at the picture to the left, I have the kind of trigeminal neuralgia that is in all three sections of my face – everywhere you see a branch of the nerve. That’s my trigeminal neuralgia; it entered my life in October 2000, weeks before my 30th birthday.

(This post focuses on how TN feels; for example – What would it be like if you were to suddenly wake up tomorrow with this condition? There will be other posts in this series in which I will discuss my treatments and other aspects of trigeminal neuralgia.)

Trigeminal Neuralgia?

In my first post on Optic Neuritis, I mentioned that trigeminal neuralgia (TN) was the second symptom, (a diagnosis apart from MS), the neurologists used as part of my diagnosis of multiple sclerosis (MS). Trigeminal neuralgia is a nerve disorder in which only 5% of people with TN have MS, and 2% of people with MS have TN. (Is this confusing? Essentially, not many people with MS have TN, and not many people with TN have MS. They are separate disorders/diseases.) TN affects the trigeminal nerve [see picture above]. It can affect one or more of the three regions: 1) Mouth, lips and jawline; 2) cheek and bottom-part of the nose; and 3) top of nose, eye and forehead. It usually occurs on one side of the face – on my right side for me. However, there are cases when it develops on both sides of the face (Even I find this difficult to imagine! At least I can sleep on my back and left side; but if I had TN on both sides, if I turned in my sleep the pain would wake me all the time!!) There are triggers that cause the TN pain: touching, smiling, laughing, eating, brushing teeth, shaving – basically anything that triggers all those little nerves in one side of the face. For the first 10 years I had trigeminal neuralgia, my face was so sensitive – even anxiety would set off an attack. During the summer, when it would get hot and humid, my multiple sclerosis would trigger my TN symptoms. In my body, it is like a vicious circle between the MS and TN.

How It All Started…

One afternoon, in early October 2000, I was at my job when a jolt of electric-like pain in the side of my right eye – almost as if it was in my eye coming from within my head. It caught my breath! Then I started to breathe again, rapidly and wondering what on earth had happened. Is this what a migraine feels like – after all my mother and brother have migraines. After a few moments, the pain started to dissipate. As I started to relax and think that maybe it was just a fluke, the same sudden flash of pain attacked along my cheekbone towards my hairline. This time I cried out – I couldn’t control myself because the pain was intolerable! I suddenly became so scared because I had no idea what was happening to me. Another lit into my forehead, but not quite as bad this time. First optic neuritis and now this unbelievable pain? I started breathing so fast that I became light-headed and grabbed for my desk chair. My co-workers ran into my office and started throwing questions at me: “What’s wrong?” “Are you ok?” What can I do?” “Do you want me to call someone?” All I wanted was to breathe and for the pain to go away. After what seemed like half an hour (but was probably only 6-7 minutes), the pain started to descend and my breathing slowed. But I noticed again, as with the optic neuritis, that the office lights were starting to hurt my eyes. I saw my purse under my desk and reached for my sunglasses. When I put them on my face, that same pain sparked and tore into my right eye and cheek. I threw the glasses to the ground as as if they were on fire. Tears started streaming from my eyes. As the tears came, so did some more pain. It was a bit less, but still almost unbearable. The pain was like it was searing through my right side of my face – like a zap!

Someone suggested that my neurologist should be called. A co-worker, who I had become friends with, offered to call the neurologist but I knew I would have to talk with him because how could anyone explain to him what I was feeling?

How Could I Say What Trigeminal Neuralgia Felt Like?

(The following poem is from Suzanne Grenell’s edited book End The Pain)

This poem and the image on the right are the best ways for me to tell and show you what trigeminal neuralgia has felt like to me for so long.

TN Attack

  Also, see Carol Levy’s blog: The Pained Life. Carol has had trigeminal neuralgia and chronic pain for 30 years.

Do you have any poems (or have written any poems) and/or quotes that describe any bends in your life’s road – anything that you were or are currently dealing with that pushed your life into a different direction (a push that was beyond your control)? How do you describe how this bend has impacted your life?

I would love to hear your own stories, and any comments, and/or questions you may have. Please do not hesitate to contact me on the CONTACT page, or CONNECT with me on Twitter, LIKE me on Facebook, FIND me on LinkedIn, and/or ADD me on Google+.

Being able to share with you about how my trigeminal neuralgia feels has been a valuable experience for me. Thank you for your open eyes and ears. Please remember that my eyes and ears are open for you.

Monique

Related posts:

1. You Know You Have Multiple Sclerosis When… (or another one of THOSE days)

 I joined an on-line tag game because I want to give you, the readers, another way of knowing me that isn’t overshadowed by my illnesses. As I have mentioned in my Main and About pages, what has helped me to manage my pain better is to embrace those parts of me that are not my TN and MS. A blogger friend and someone who has helped me adapt to the blogosphere, Marcy Kennedy, did something different in her Friday blog post. She was tagged in a game of online-blogger tag and another game. I’m going to stick with tag, so…Let’s Begin!!!  

Game of 11 Questions

Here are the rules:

1. You must post the rules
2. Answer the eleven questions, then create eleven new questions to ask the people you have tagged.
3. Tag 11 people and link to them (use as many people from MNINB)

As I mentioned, I was tagged by Marcy Kennedy. She was tagged by two people and didn’t want to answer 22 questions and so chose some questions from each set of 11 questions. I, too, am going to adjust the rules a bit – to make the game my own. Instead of creating 11 new questions for my 11 people, I am going to create 10 questions, and keep one of the questions that Marcy created. ARE YOU READY TO BEGIN? Let’s Play!!

1. If you could have one magical power, what would it be?

My magical power would be to fly. If I could fly and move quickly from one place to another, I could visit many cities and countries that I have never been to. I have wanted to travel more and this power would allow me to do fulfill a dream.

2. You have to give up one of your five senses. Which one would you choose and why?

I would have to say that I would give up my taste. For many reasons I have been pre-occupied by the taste of food since my illnesses seemed to have dominated my life. For me, I want food to be for sustenance and use my energy and time for eating to go towards my other four senses.

3. What is your super-secret Hunger Games survival skill?

I read the Hunger Games 6 months ago and I have not seen the movie. Therefore, I am not as familiar and up-to-date as other people are with this movie. So, I’m going to pick another question from the questions that Marcy had to answer. The question is:

If you decided not to be a writer, what would your other dream job be?

If I couldn’t be a writer, and I didn’t have multiple sclerosis or trigeminal neuralgia, I would want to be the director of a community mental health agency. I received an M.S. in counseling and started my doctorate in counseling psychology. During that time, I was the assistant director of a research center for programs for adolescents and families. I loved the job of being assistant director by managing the center and helping other people by making it easier for them to do their job. I would love to work in a center that did both research and counseling so that we knew what we were doing with our clients was actually working.

4. If it wasn’t illegal and/or cruel, what exotic, wild animal would you want as a pet?

A black panther! I am fascinated by cats – small and large. Even ferocious ones have their playful sides. I enjoy watching films of large cats because you can really see their different personalities. As an adult, I always have adopted one or two cats and been amazed by their hunting abilities, playfulness and affection.

5. You’re given a chance to co-write a book with any author (living or dead). Who do you choose and why?

I would choose Anne Rice because she is extremely knowledgeable about history and creative in her story-telling. Additionally, her characters are dynamic, fascinating and captivating. She knows how to envelope the reader into the worlds she creates. And yes, I like vampires and many of the main characters in her book. Her Christ the Lord series is an interesting perspective of her renewed interest in Catholicism and her faith.

6. An asteroid is barreling toward the earth. There’s nothing you or anyone else can do to stop it, and it’s large enough that it will pulverize the planet so that no one survives. It strikes tomorrow. How do you spend your final day?

I would go to the nearest largest town/city and hug and provide comfort for as many people as I can. Some people may be living it up, but I assume that many will be scared. Instead of these people being scared alone, I would hope that they would find some measure of comfort in the community of one another and embrace their last day on earth.

7. We all have one way that we’re terrified of dying. My husband is afraid of drowning, and I’m afraid of being burned alive. What’s yours?

I am afraid of being buried alive – it’s the intense claustrophobia that would cause me to lose my sanity! In general I am not claustrophobic unless the ability to escape is extremely limited through a singular exit or it is easy to be trapped. Being buried alive automatically limits my ability to escape and by definition, I am trapped!

8. You can only have one dessert (including candy and all salty snacks) for the rest of your life. What’s the one you have to have?  

 Oh – so many to choose from! There are some that I would love to eat for several weeks; but then I would get sick of them.

Therefore, I would choose: HOMEMADE OATMEAL RAISIN cookies – a little crispy on the outside and chewy on the inside. Mmmmmm!

9. If you could bring one fiction character to life, who would you want to meet?

Wow! This is a hard one. The character would probably be a female: Dr. Diana Bishop from the story A Discovery of Witches by Deborah Harkness. (I know…I’m sticking to modern fiction. These are the characters in my head!) The book involves history, literature, mystery, alchemy, Darwin, mysticism, time-travel, and more! Diana, in the novel, develops into a powerful witch. In the beginning, she wants to suppress who she is and be normal. However, she then realizes that she is from a lineage of witches and what an honor that is to be part of this powerful family. Diana is extremely brilliant, and her bravery grows as the story develops. I would love to discuss with her about her knowledge, her history, and how she envisions herself in the future. I also, would love to meet her amazing aunts. I love historical fiction, no matter who is the protagonist. This first book is not completely historical; but the second one, available in July, is historically based. Also, the story’s setting is Oxford, England, which is one of my favorite cities. My uncle lives there and I wish I could visit more often!

10. Favorite kind of coffee, tea, or hot chocolate?

Thank goodness! An easy question! My favorite kind is Gunpowder Green Tea.

…And the last question is:

11. What are the three things and three people you’d want stranded on the deserted island with you?

First thing: a Kindle, which would be filled to its limit with books I have always wanted to read and some books that are my favorite, that would have internet access through satellite. Second thing: a pair of clean undies (other than the one I would be wearing). That way I can alternate them and wash them. Third thing: a giant box of matches in a waterproof sack – for fires, light, etc.

First person: the 14th Dalai Lama. Second person: A toss-up between my good friends Cynthia & Jeannie. Third person: My uncle Clive.

The Tagged People and Their Questions:

1. Jennifer Chow from http://jenniferjchow.blogspot.com/

2. Rachell Cornell from http://pronagger.com/

3. Kelly Williamson from http://www.thisismentalserious.blogspot.com/

4. Robert Lee Brewer from http://robertleebrewer.blogspot.com/

5. Kristy K. James from http://kristykjames.com/Blog.html

6. Joseph Lalonde from http://www.jmlalonde.com/

7. Elizabeth Saunders from http://elizabethsaunders.blogspot.com/

8. Heather Button from http://myquirkycity.wordpress.com/

9. Paul Ellis from http://dsnite.blogspot.com/

10. Shelley L. Domingue from http://eypage.blogspot.ca/

11. Veronica Roth from http://veronicaroth.com/

Questions

1. If you could re-live a moment/event, what would it be?

2. What are the three worst books you have read (or at least read half of the book), and what did you not like about them?

3. What are your two favorite words and what do you like about these words?

4. We have been introduced to several social networks so far: Facebook, Twitter, Blogs, and LinkedIn. (If you also use/are familiar with other networks, such as Google+, Pinterest, YouTube, Tumblr, etc., you can include these as part of your answer.) Which one do you not like and why? Which is your favorite, and why?

5. If you could plan how you could die, what day/date would it be (it has to be within a 100 years of your birth date) and how would you die? Would anyone be with you?

6. What person, living or dead, would you like to spend the day with? What would you do for those 12 hours?

7. What three foods do you not like to eat?

8. What was your favorite adventure? After naming the adventure, describe it in 5 words.

9. In which historical period would you like to live? The period has to be at least 75 years from now.

10. If you could cure one disease existing in the world , what would it be?

And the one question I chose of Marcy’s is:

11. An asteroid is barreling toward the earth. There’s nothing you or anyone else can do to stop it, and it’s large enough that it will pulverize the planet so that no one survives. It strikes tomorrow. How do you spend your final day!

All tagged people listed above (and any others who volunteer) should link their blog post back to my website: www.bendsintheroad.com/blog/.  And if there are any readers who would like to participate (except for people in the MNINB April Platform Challenge), consider yourself tagged. I can’t wait to read your answers!!!!!!!

I hope everyone has fun with this post and, as readers, you enjoyed learning more about me other than my MS and TN.

I definitely enjoyed sharing this with you!

Monique

You know you have multiple sclerosis when…

Since I decided to write a blog, I was afraid of days like today. This was why I wanted to have three posts ready prior to the website launch date. However, that didn’t happen due to various reasons, one of them being my health. The three weeks prior to the launch, I pushed my body to its limit; my body is now pushing back and giving me all sorts of symptoms to struggle with.  My second post this week was to be about why I decided to write a blog. I decided, instead, to write this post about my current flair-up of multiple sclerosis (MS) and trigeminal neuralgia (TN) symptoms that I have been struggling with since late Tuesday and have worsen since then.

The key thing to remember with my symptoms is that they are not the same 24 hours a day 7 days a week. Sometimes, I feel good for a couple of hours in the late morning and then the next minute I have an intense strike of my trigeminal neuralgia pain in my right eye – like a lightning bolt.  Other times, I feel a bit fatigued so I take a nap hoping to feel better, only to feel twice as worse when I fell asleep. MS is VERY unpredictable and unreliable. It creates havoc in my social life, and any type of work I do. I am learning to manage it better. It’s taken me years and I am still learning.  Next week, I’ll return to my original plan of discussing why I chose to write a blog and describing trigeminal neuralgia (TN).

Multiple Sclerosis

Both MS and TN are neurological disorders. In MS, the myelin sheath (which insulates the nerves protects communication travelling along the nerves) breaks down. Thus, when demyelination occurs, the myelin sheath breaks apart and messages travelling along the nerve are not properly delivered to the right place. For example, during a flair-up of my MS symptoms, my right leg does not lift as high as my left leg does; also it is painful to walk. With MS, there are a variety of symptoms, such as (but not limited to):

• muscle weakness
• fatigue (same as above)
• pain                                                                                                                                       
• heat/humidity sensitivity
• depression
• bladder dysfunction                                                                                                                                    

  from: http://www.healthline.com/health-slideshow/multiple-sclerosis#10

Today, my main MS symptoms are extreme weakness all over my body, fatigue, and pain in and trouble walking with my right leg. Defining MS weakness can be difficult. Try to imagine the last time you were really sick with the flu. Remember how weak your body was? You couldn’t really sit up, let alone stand. Moving around to go to the bathroom or get food was so hard to do. This is how I feel when I have MS weakness.

My MS fatigue usually occurs on a daily basis, but at varying degrees. Today, it was a “7.” My fatigue feels like I have to exert so much energy just to keep my eyes open, my body awake, and my mind moving. All I want to do is lay down and rest and sleep; this may be true even though I may have slept 9 hours that night. My thoughts are sluggish. It takes me so long to think – to compose even this seemingly straightforward post. It’s as if my body and mind are moving through sand; like my mind is moving through quicksand sometimes.

Trigeminal Neuralgia

Trigeminal neuralgia is also a neurological disorder (usually occurring on one side of the face). My TN is on my right side and feels as if there is a sudden shock-like, electrical pain in one or more of the three areas of my trigeminal nerve (get it “tri” meaning three.   I know lame..but give me some leeway today):

1. Forehead and eyes
2. Cheek and the side of the nose
3. Lips and jawline

from http://www.migravent.com/blog/tag/trigeminal-nerve/

Today, my main TN pain is in my mouth/lips and along my right jawline. In addition to my TN pain, there is a side-effect of a TN surgery I had in 2006 that resulted in a constant feeling of pain and numbness called anesthesia dolorosa. We’ll discuss it more when I do my post next week on TN. For now, just know that it feels as if there is a persistent low level buzzing. Sometimes the buzzing and pain is more intense than others. Think of it as the static on a radio. When you turn up the volume, the static is louder (my static is more painful). When the volume of the static is lower, my pain is less. Well, today, my static is fairly bothersome – a 6 on a volume scale of 1 to 10. It is painful enough to limit my talking. This is one of the reasons why I started a blog: to reach out to other people through the web because I could not always keep in touch by speaking on the phone. I became active on Facebook, Twitter, online-chats, because speaking was becoming more difficult for me  

Why Tell You All Of This?

In this post, you got a peek into what are some of my “not-so-great days.” This is NOT a pity-party. I have lived with this at varying degrees for 12 years. I know that eventually the pain, weakness, fatigue, everything will go low enough on the intensity/volume dial that it will not stay in the foreground of my days.  Nothing stays the same. When I am in extraordinary pain, eventually the intensity will decline. When I am feeling good, eventually I will be in pain again. The “When?” and the “How Long?” are the unknowns and were scary for me for many years. This is true for anything in life. If we are having rough times with our spouse, eventually things will get a bit better. The when and how long from now are the difficult unknowns. I have to be patient, not add to my pain by getting emotionally upset and anxious, and I have to persevere. Please understand that I don’t do a great job of managing my MS and TN all the time. I cry. Feel weak. Lash out at loved ones, I feel down and get depressed at times. One of many things that keeps me going is that I have hope in that I know my situation will change, even if it’s in a small way. On my part, I have to work at patience, relaxing, ask for help with loving-kindness, and truly have hope in my heart. I have not always been able to do this. The main turning point was November 2011 when I chose to reach out to others more and not live inside my own head and think that what was happening to me was the worse thing in the world. Yes, it sucks. Oh, TN and MS are my enemies at times. I am sometimes jealous of healthy people. However, these emotions make me feel worse because they fill my heart, my soul with darkness. And darkness is heavy. My life is heavy enough with my illnesses, why should I add to it? This is where I have a choice on how to respond (rather than just react) to my MS and TN. I did not have a choice about getting them, but I still have a choice on how I want to be defined by them. But this takes time; it took me many years and I’m still working on it!

***Has there been a time in your life when you felt overwhelmed by situations, life events, or bends in the road that were confronting you. How did you face the situation(s)? (For example: Did you try to find some managing techniques, get help from friends or others, make it an enemy, etc.)***

I would love to hear your own stories and/or comments you have.  And if you have any questions – please don’t hesitate to contact me via the CONTACT Page, Facebook, Twitter, or by email at  monique@bendsintheroad.com

Please be sure to look at the Bends In The Road Facebook page for additional information about this post.

I’ve enjoyed sharing with you –

Monique

From: whipping.cats.blogspot.com

For some reason I chose to launch my blog on April 1, 2012: April Fools’ Day (AFD). When my brother and I were small, we would help my mom draw and cut out paper fish and then safety-pin them on the inside of my father’s pajama bottoms! Why? Because we were fascinated with paper fish?!

Even though my father is British and we lived in England at the time, my mother is French-Canadian and I also was born in Canada. In Canada (especially Quebec) and France, April Fool’s Day is identified mainly as Poisson d’Avril (literally: “Fish of April”). Much of AFD jokes in Canada focus on the theme of fish – paper fish stuck on a person’s back, paper fish in lunch boxes, real fish in boots, fish, fish everywhere. And when the person found the fish (on one’s back, in the boots, etc.), the person playing the practical joke would cry, “Poisson d’Avril! Poisson d’Avril!

As a child I looked forward to AFD to participate in this “paper fish in dad’s pajamas” tradition. We played other pranks on each other, but nothing was as memorable as cutting paper fish, putting them in my Dad’s sleeping bottoms, and then hide as he put them on and acted so surprised! Those were harmless and fun Aprils.

Then One Morning…

April 2000 became a memorable month for me, but not because I still celebrated Poisson d’Avril on the 1st.  An event occurred, but not on April 1. At the time, I seriously thought that someone was a little late with the jokes. On April 15, 2000, I woke up at around 7am with a speck in the middle of my eye. I rubbed my eyes, thinking it was crusty sleep. I then walked to my bathroom and turned my face so my eye was under the faucet and lightly ran the water so that it could rinse the speck of dust out of my eye. I wiped my face on a towel. But there it was! It was still there. “Well,” I thought to myself, “It will come out during the day. Maybe the wind will blow and remove this speck or spot or whatever it was.”

I got dressed (and again soaked my face under the shower thinking the sink didn’t have enough water pressure to push the speck), and took my dog Akea for a walk in the field. I could tell the day was going to be a beautiful one – no humidity, sunny with those fluffy clouds. The problem was it sure as heck was really bright! When I got back to my apartment, I grabbed my sunglasses and drove to work.  When I tried to take off my sunglasses in my office, the lighting was almost blinding. I walked into my boss’ office and he mentioned the sunglasses. As I explained what had happened, my-co-workers started asking me questions. I said that I noticed this speck and it hadn’t gone away…and now bright lights were hurting my eyes. Jack (my boss) confidently suggested I should call the optometry school immediately to get an appointment. I thought he was over-reacting a bit, but I thought it might be a good idea. When I called the school, they happened to have an opening the next day. At this point, I was quite relieved as there was pain developing in my eye.

The Next Day… My appointment lasted THREE HOURS long! I did not wait THREE HOURS. No, it was three hours because they were giving me a comprehensive eye exam plus much more. They intensely examined my right eye, calling in other optometrists, and finally the top honcho – an ophthalmologist – in the office took over my case. “This is ridiculous!” I thought.

Optic Neuritis?

My mind started! I had been in the optometry school for three hours. I had work to do. I then needed to go home and walk my dog, Akea. That was it, I thought. I stopped the ophthalmologist and asked him what was the problem – what was wrong with me? What was taking so long? He placed his right hand over his chin and rubbed it for a moment. He looked straight into my eyes  and said, “You have optic neuritis, which is an inflammation of the optic nerve. This inflammation can last for a week or so or for several months; and it can affect how much you can see through your right eye. For now, we need to get you immediate treatment, which will consist of 1,000 mg of intravenous solumedrol (which is a type of steroid like prednisone) for three days in a row. I have to get on the phone with a neurologist and then we will send you over to the hospital.” I stood up quickly before he left the room and half-squealed: “What is the optic nerve? Where is it? How did any of this happen?” He took several seconds and briefly told me it was the nerve that led from the brain to the eye. I asked, “Can optic – what’s it called again?” “Optic neuritis, ” he said plainly. “Can it be fixed by using glasses?” The ophthalmologist replied that it couldn’t because the nerve was coming from inside the head and brain. It had nothing to do with the lens of the eye – which can be corrected. Great – just great!

The Optic Nerve

 MS Optic Nerve Attacks and Symptoms

The ophthalmologist left the room. There I was sitting in those black chairs that move up and down and forward in front of the big eye-examining machines, and I thought to myself, “He must be joking. It’s April 15^th – not April 1^st. I am in great shape. My eyesight is better than 20/20. I don’t have EYE problems!” Then, it hit me. WHAT ON EARTH DOES THIS MEAN!!!! Do I have a tumor? Am I going to die? What? The next hour moved so quickly. Someone (I don’t even really remember who) drove me down the street to the ER. A nurse got me ready for an IV. Then the neurologist opened the curtains. He was an elderly, kind-faced man with a smile on his face. He said, “My name is Dr. W. What have they told you?” I said the same thing (sort of) that the ophthalmologist told me and ended with, “What does this all mean and why am I seeing you – a neurologist – for an eye problem?” Meanwhile, as we were talking a nurse came in and hooked up a bag to my IV. Dr. W replied that right now they were doing day one of the treatments typical for optic neuritis. Then, I would return to the hospital for the next 2 days. As he was putting my file under his arm, he handed me a card and said, “We will meet on Tuesday afternoon to discuss how you did over the weekend.”

Due to optic neuritis (ON), I could not read out of my right eye for 10 years and, for the first 4 months, I had stabbing pain in my eye when I moved it. Even now (12 years later), some words in the center of my vision are still missing when I try to read with just my right eye. For about a week after I was diagnosed with ON, I struggled with depth perception as well. You should have seen me on campus carefully walking to the edge of the curb and slowly placing my foot on the street! Stairs were even worse. It took almost 3 weeks for my eyes to adjust so that I could see and read using both eyes. I was still struggling from my loss of vision in my right eye, when another problem occurred that same year: trigeminal neuralgia (TN) – A.K.A. “freakin’ extreme neurological pain in my pace!” TN ripped into my life and turned everything around. It interrupted my studies, my time with friends, plans I made and much more. Both ON and TN were related to my diagnosis of multiple sclerosis (which occurred in September 2011). ON was my first symptom of multiple sclerosis (MS). With ON and TN, my life changed drastically. I was an active, outdoorsy person who became very limited in my activities due to extreme pain in my face and then my right leg. But we can talk about that in another blog post.

In my About page, I mention that this blog is about my journey:  journey from a healthy and active person to someone struggling with various diseases including depression and then to my present life of learning to manage my ailments. And, in addition, not being defined by them. I don’t simply want to cope with life and pass the time. I honestly want to live a life that is mine in which the choices I can make are deliberate and not reactive. I no longer want to take from family and friends; I want to give back to life. This understanding of me as more than my body and being a sick person was a major turning point. My change in perspective moved my life journey to a different direction even though my life had turned another way due to external circumstances (like optic neuritis and multiple sclerosis) that were beyond my control.

What has happened in your life that changed your path from one direction to another  – a change that was beyond your control?  Did it change you as a person? How?

I would love to hear your stories – bends in your life-road – or any comments you have. They don’t have to be related to ON, MS, or TN. And if you have any questions – please don’t hesitate to contact me via the Contact page, Facebook, Twitter, or by email at  monique@bendsintheroad.com

I’ve enjoyed sharing with you –

Monique

(please click on title above to leave comments)