~Monica Reents
August 2016
January 2, 2017
April 13, 2016
What a little sunshine can do!
I love this time of year! Sitting in the comfort of our Lazyboy recliner, I am able to watch the sunrise behind our trees. What a beautiful sight! This picture was taken early one morning when my pain was especially high and my mind couldn't focus on anything else...until I noticed how the sun began filtering through the trees, casting shadows, and creating a dream-like view.I was able to allow my mind to drift off into this other place... where pain does not exist and life is simple again. Even if only for a for a few moments.
****
The warmth of the sun is a magical thing! It has the power to calm my overactive nerves. I find such great writing inspiration when I am outdoors. The sights and sounds and smells build my creativity to new heights that I just don't reach when I am indoors. I dream of living somewhere that is always above 75 degrees with the sunshine glowing every day. I can almost imagine my pain slipping into submission against the warm surroundings.
On the realistic side, if I awoke without pain, I would think that I had not survived the night! For instance, this morning I woke up with heaviness in my arms, hands, and legs (the left leg hurts to the bone), and the inability to move with any amount of speed or precision. My left leg often feels like it is full of jello, you know the kind that turns into cement when it settles. It's extremely difficult to motivate limbs that have created their own type of 'existence'. I fear what the future may hold for this body of mine.
However, my mind is doing it's best to become the strength that holds everything together. My memory is weaker than it used to be, which is a problem experienced by those of us with syringomyelia and/or fibromyalgia. But that is what notebooks and phones that you can talk to or make notes in are for. Our personal handheld-memory boxes...with the added bonus of being able to set alarms!
I will be adding to my medical resume this Friday when I have another surgery. This one is mild compared to my spinal surgeries. I am having laparoscopic surgery for my left ovary. I have a suspicious and painful cyst that has plagued my body for about one year. I'm tired of dealing with it. So, my doctor will look at the cyst to get a good visual of what he is dealing with, then remove the whole ovary. A few days of rest and soreness will be what it takes to rid myself of one of my body's pains. Yes, please!
I intend to write, read, and color during recovery. There are some deadlines coming up that I would love to meet. As well as, work on this book of poetry that I would like to see published sometime this year. Like most of us, I have many projects, ideas, wants, and wishes that make me feel like I have floated up to the moon once completed. But, it is my dreams that keep my heart and soul thriving!
Have Faith in Yourself!
Monica
April 8, 2016
Here's to mental-state-saving hobbies!
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| This window box was a wedding gift from my husband :) |
I have also jumped on the bandwagon with thousands of other adults and I have started coloring!! I loved it as a child and have found that it is now one of my favorite things to do. It's relaxing and helps take my mind off of my high pain levels.
I would love to see your hobbies! Please feel free to share your pictures in the comments...coloring, gardening, books you love, exercise, writing, drawing...anything you want to share!
Let's keep a strong hold on the things we love, openly embrace new things, and have faith in yourself.
Monica
Staying Strong Against the Ignorance
There is so much to share when it comes to talking about having any chronic illness. There are symptoms, doctor appointments (or...dis-appointments), treatments (and mis-treatments), medications (another trial and error period in our lives), fatigue (I only went to the bathroom!), chronic pain, the I-always-feel-run-down blues, depression, homeopathic therapies, physical therapy, the I-used-to-be-able-to's always lingering in the back of your mind, past-time changes because "everything" becomes difficult, emotions having their way with you (that can be so uncomfortable for someone who asked how your day is going)...I truly could go on. There. Is. Just. No. Untouched. Part. Of. Life.
Like, many of you, I have regular doctor appointments along with several unexpected visits and they don't usually end positively. My appointments have (mostly) ended with, "you have an illness called... syringomyelia, hypothyroidism, arthritis, fibromyalgia, endometriosis, degenerative cervical osteoarthritis, kyphosis (abnormal forward curvature of the neck), Chiari malformation zero, and asthma".
I had an appointment with my pcp this week to have my ears checked, the ache has increased into pain and is spreading into my face. It feels nerve-like, or muscular but, I wanted to make sure that there was no infection because I am having surgery at the end of next week. If you have a rare disease, or multi-symptom-difficult-to-treat disease, you know that it can be difficult to make the medical world understand your phlight. My doctor had a family emergency and I was asked if I would like to see another doctor...No!, I don't want another doctor, it has taken me almost five years to get this one used to hearing my ever-changing list of symptoms! (**SIGH**) So, I said ok.
Lo and behold, this other "Dr." refused to believe that my symptoms were anything but LAZINESS!! Are you freaking kidding me?!? I've had numerous tests along with 15 MRI's since my diagnosis in July 2011 that show how the syrinxes have stretched and damaged my spinal cord (the spinal cord is involved in every aspect/function of our bodies). I haven't been lazy a day in my life, unless you count the surgical days...then there's been several in the past five years. But, that's just for you technical folks. He proceded to tell me that I did not have an infection and that if I would exercise, more specifically, if I would do yoga, then I would feel better and could kick my addiction to medications!! Whoa! Where did all of that come from?! Could he see all of that by looking into my ears?! Is yoga the cure for syringomyelia?!! He doesn't know me at all. I do exercise (yoga, specifically PIYO, and I love it when I am able to do it), I rarely lay around because laying down is insanely painful, I take medications that are necessary to keep me moving and make everyday possible, and I have never abused my medications. I was shocked by the rambling and the amount of I-need-tall-boots-on-for-this-sh*t advice he was dishing.
I waited for him to finish, I did not interrupt because it is rude, actually it is more like, wait-for-them-to-dig-their-own-hole before pushing them in it! I told him that I have syringomyelia (I'm sure he had to google it) and that I don't need this...as I left the room. It felt as if he was speaking down to me. I didn't ask to have an incurable rare disease that has NO TREATMENT PLAN. I do ask for compassion and understanding. Is that too much to ask?
This disease has literally changed every aspect of my life. I was 34 years old when I was diagnosed and I am 39 now. I will have this disease (and all of the others that come with this package) for the rest of my life. People are dying from the complications of this disease. Yet, it is still not a priority in the medical community. It is an extremely abandoning place to be.
I know this sort of treatment is displayed across the world, I have read many stories like this one from others in my support group. How awful must we be made to feel before someone decides that we (those who suffer in this life) might know more about our bodies and should be taken seriously before action is taken?
It is a lack of knowledge that provides the ignorance we hear everyday.
I have hope for everyone that they will find the strength to perservere and strive for the best life you can live. You may have to readjust your goals and dreams but it is necessary to continue living everyday.
Have faith in yourself.
Monica
Like, many of you, I have regular doctor appointments along with several unexpected visits and they don't usually end positively. My appointments have (mostly) ended with, "you have an illness called... syringomyelia, hypothyroidism, arthritis, fibromyalgia, endometriosis, degenerative cervical osteoarthritis, kyphosis (abnormal forward curvature of the neck), Chiari malformation zero, and asthma".
I had an appointment with my pcp this week to have my ears checked, the ache has increased into pain and is spreading into my face. It feels nerve-like, or muscular but, I wanted to make sure that there was no infection because I am having surgery at the end of next week. If you have a rare disease, or multi-symptom-difficult-to-treat disease, you know that it can be difficult to make the medical world understand your phlight. My doctor had a family emergency and I was asked if I would like to see another doctor...No!, I don't want another doctor, it has taken me almost five years to get this one used to hearing my ever-changing list of symptoms! (**SIGH**) So, I said ok.
Lo and behold, this other "Dr." refused to believe that my symptoms were anything but LAZINESS!! Are you freaking kidding me?!? I've had numerous tests along with 15 MRI's since my diagnosis in July 2011 that show how the syrinxes have stretched and damaged my spinal cord (the spinal cord is involved in every aspect/function of our bodies). I haven't been lazy a day in my life, unless you count the surgical days...then there's been several in the past five years. But, that's just for you technical folks. He proceded to tell me that I did not have an infection and that if I would exercise, more specifically, if I would do yoga, then I would feel better and could kick my addiction to medications!! Whoa! Where did all of that come from?! Could he see all of that by looking into my ears?! Is yoga the cure for syringomyelia?!! He doesn't know me at all. I do exercise (yoga, specifically PIYO, and I love it when I am able to do it), I rarely lay around because laying down is insanely painful, I take medications that are necessary to keep me moving and make everyday possible, and I have never abused my medications. I was shocked by the rambling and the amount of I-need-tall-boots-on-for-this-sh*t advice he was dishing.
I waited for him to finish, I did not interrupt because it is rude, actually it is more like, wait-for-them-to-dig-their-own-hole before pushing them in it! I told him that I have syringomyelia (I'm sure he had to google it) and that I don't need this...as I left the room. It felt as if he was speaking down to me. I didn't ask to have an incurable rare disease that has NO TREATMENT PLAN. I do ask for compassion and understanding. Is that too much to ask?
This disease has literally changed every aspect of my life. I was 34 years old when I was diagnosed and I am 39 now. I will have this disease (and all of the others that come with this package) for the rest of my life. People are dying from the complications of this disease. Yet, it is still not a priority in the medical community. It is an extremely abandoning place to be.
I know this sort of treatment is displayed across the world, I have read many stories like this one from others in my support group. How awful must we be made to feel before someone decides that we (those who suffer in this life) might know more about our bodies and should be taken seriously before action is taken?
It is a lack of knowledge that provides the ignorance we hear everyday.
I have hope for everyone that they will find the strength to perservere and strive for the best life you can live. You may have to readjust your goals and dreams but it is necessary to continue living everyday.
Have faith in yourself.
Monica
August 29, 2015
Book Quote: A Year by the Sea by Joan Anderson
"Be patient toward all that is unsolved in your heart and try to love the questions themselves. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answers. "
~Written by Rainer Maria Rilke
Letter to a Young Poet
Another quote from this book that I love is, " I must learn to surrender in the moment."
I found these in a book that I am reading called, A Year by the Sea by Joan Anderson. It is a great book about the reflections of a woman who had lived her life taking care of her family, putting herself on the backburner (as most women do), until the family moves on ...her drastic decision to find herself shocks everyone, including herself.
My best friend Kristine Raymond gave this book to me and it is a great read! I think it would make a great gift for any woman :)
I definitely recommend this book to all women!
Take Care xx
~Monica
~Written by Rainer Maria Rilke
Letter to a Young Poet
Another quote from this book that I love is, " I must learn to surrender in the moment."
I found these in a book that I am reading called, A Year by the Sea by Joan Anderson. It is a great book about the reflections of a woman who had lived her life taking care of her family, putting herself on the backburner (as most women do), until the family moves on ...her drastic decision to find herself shocks everyone, including herself.
My best friend Kristine Raymond gave this book to me and it is a great read! I think it would make a great gift for any woman :)
I definitely recommend this book to all women!
Take Care xx
~Monica
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