Finding Balance in Your Life

Happy Monday, everyone! I hope that you are all doing well and feeling your best, enjoying the warm sunshine and long of summer!
I have been doing my best to enjoy these warm days, since it has finally stopped raining. I love being outdoors with the sun on my face, but no wind in my hair please and thank you. Wind has become an enemy of mine since my diagnosis with syringomyelia. The nerve damage that I have makes the feel of wind on my skin comparable to that of sharp blades, or tacks, prodding me. You can imagine how uncomfortable that would be. So I avoid windy days, living in Kansas, that means a lot of time indoors. That's where I have found the importance of hobbies. Writing, coloring, zentangles, reading, word games ...these things have saved me. Well, that and Amazon. I love being able to have almost anything delivered right to my door. I just need a small elf to come in and help with chores!

So, today I write from my bed. I have been sick for a couple of days and struggling to do the slightest activity.

This added to the muscle I pulled in my neck about a month ago, I feel as good as someone who has been run down by a steam roller ...twice. This muscle in my neck has gone up the back of my head, creating limited movement, excessive pain, and activity limitations that I'm not too happy about. I was fishing with my husband when I pulled this muscle, it happened when it was still fairly cool outside, I began having spasms in my neck and shoulder area, I immediately set my pole down, and went to lay in the truck. I have been paying for that night ever since. Catching the largest crappie that night is no consolation for a months worth of suffering. Now, I wait until I know it's warmer outside, still in need of a light jacket even when it's 80 degrees, and I take a book to read. I have become a spectator. I won't be bitter (entirely) I have a lot to be thankful for and without those thoughts, I would go insane over the changes this disease has brought about. I pray each of you are able to find some normalcy, or peace, amongst the battles of your life.

Finding balance in your life when you have a chronic illness is extremely difficult, everyday presents a new challenge, sometimes it is those unknowns that knock you off of your feet. Let them. Let those unknowns bring you down but only a little. Enough to allow your body to rest and to feel what's happening, it's your bodies way of telling you something. I knew that I shouldn't have been outside in that weather, but I had to, I have to push myself to do things that I enjoy. Even when the consequences will knock my bodies defenses down. I don't recommend doing this on a regular basis, but sometimes a person just has to remember what it's like to not think about how everything they do will make them feel tomorrow. I never engage in anything that will harm me permanently, but getting out and doing ...keeps your mind strong. A strong mind and spirit will do wonders for a persons health.

I hope you all find what you need to put a smile on your face, and the faces of others! I'm off to rest now.

Thanks for stopping by my blog, I truly hope it helps you in some way. Follow me on facebook, Twitter, Pinterest, and Instagram for more posts, pictures, and sharing!

I wish you plenty …of love, understanding, support, spoons, and dreams come true!

Monica Reents

Take Time to Dance 🎶

I just love this image and the saying, it couldn't be more accurate!  No matter what life hands you, listen for the beat and make it yours 🎶🎵🎶

I wish you plenty...of support, patience, love, & spoons.

((((Gentle Hugs))))

Monica

Realizations

It's part of life. From realizing that your parents aren't the perfect people that you once thought, finding out that your middle school musician crush is not going to suddenly step out of that poster on your wall and fall in love with you, to realizing that the difficult truths of life aren't always easy to swallow, and while you are realizing all of these things...you will find the beauty in life. 

Life is happening right now. It's all around us. For some, it's passing by without a second thought.
Even as you read this post and are wondering where I am headed with this, you are living. It may not always seem exciting to perform your daily chores and routines, what would you do if all of that changed and you lost control, you lost the ability to do the mundane?
That's what happened to me when I was diagnosed with syringomyelia. One day I woke up, went to work to perform a job that I truly loved and one doctors appointment changed all of that. An MRI showed, what they thought was a massive tumor,C3 to T10, (possibly cancerous) and the neurosurgeon who broke this news to me, was scared to even touch me. That is probably the first time in my life, where I can say that I was terrified. The tears took control, I trembled. The list of restrictions continued to replay through my thoughts and my poor husband of only a month, was devastated.

I realized how precious life is, how it can change without notice, and how important it is for the people you love to know that you love them.

Another surgeon was found. He's wonderful and I may not be here if it weren't for him. I find that I am more grateful for things that I didn't give much thought to before July 2011. I watched myself lose function of my arms and hands, I felt the pain travel through my body, and I watched my family sit next to me, feeling helpless. We all felt lost for awhile. This rare disease had invaded our home and we knew it wasn't going to leave.

I realized the importance of life. How it is important to live, follow your dreams, support others, be the best person that I could be under all circumstances.

 



My pain increases with time, as does my desire to pursue a lifelong dream to publish my writing. I had always been accepting of letting it be a hobby. But my life changed and I had to change with it. I am no longer able to work outside the home; I have been officially labeled 'disabled'. Not sure that I know how to feel about that, since I am only 37, but I manage and I know that there are others out there who are in more need than I am. I'm grateful for everything that I have. I joke with my dad that I got a Medicare card before him! He paused before laughing...it never seems to get easier for him. A positive attitude and sense of humor will go a long ways to helping a person deal with tough circumstances.

Syringomyelia is a rare progressive disease; it is classified as an autoimmune disorder. That is a lot of big medical school lingo for 'you will gain many painful disorders over your lifetime'. I was diagnosed in late July 2011 and my first surgery was August 8, 2011 (my 'zipperversary' date). I have also been diagnosed with fibromyalgia, arthritis, cervical degenerative osteoarthritis, hypothyroidism, and chronic pain. The arthritis is getting worse and is affecting all of my joints. Last night was another long night. I was up all night because lying down is extremely painful to the back of my head and my neck. Lying down (being still) also causes my joints to begin to stiffen and it is quite painful when I don't try to keep things moving. Last night, I couldn't even hold a book because my hands couldn't fold around and hold it. Sigh. The realization here...remain positive. Don't become too caught up in what you have lost; take it one breath at a time and have someone you can lean on.

For those of you who have read some of my other posts, you may think to yourself that some of this is a repetitive. And you're right. Much like my everyday life, some days are just like others! But! I do gain new symptoms that add a teaspoon of something here, a cup full of something there, and a bucket full of surprises all over! Which keeps me human. I currently have two syrinxes inside of my spine, both are in my cervical area. One of them is causing a lot of pain (this was my latest bucket full of surprise) and I will have another decompression surgery this fall. Surgery doesn't worry me as much as the recovery.

Realizations are what help maintain my sanity. I prefer the facts. I don't want a bunch of fluff when the doctor is giving me a new diagnosis. I already know that I have everything that I need. I do my best not to be too extravagant. There is so much to be thankful for and I don't want to be thankful that I have the latest designer bag, I want to be thankful that I sat outside and watched the sunset or rise, thankful to spend two hours on the phone with my best friend, etc...etc...

Things look differently when you are looking at them after a life changing event. I don't know about you, but, at first, everything was muddy. I've had three years to clear the mud from my eyes and I fell in love with what I saw...the future that I was able to create!



Euripides said, "Enough is abundance to the wise". I love this saying! It sums up my feelings so simply.


Thank you for reading and please have a great weekend!

Best Wishes,
Monica

Living through days with no fault or feeling...or is it rhyme or reason...i forget

The purpose of this blog is to create a written timeline of how I'm feeling, how this disease is progressing, how I am dealing with it, how my family is dealing with it, my ever changing symptoms, etc...you get the point. However, I have done a terrible job with it. With this disease being such an unknown, rare disorder, how is anyone to learn about it, if no one talks about it?! My goal...to use this blog as intended.  Here goes.

Today is Tuesday June 17, 2014. I actually had to look at my calendar to know that, I honestly thought that it was Wednesday. That happens a lot. It's not just being busy and losing a day here and there, I do that ALL of the time. My issue with dates makes keeping appointments difficult and makes keeping up with everyone else's schedule downright impossible.  

Sleeping is a whole other issue.  I fear lying down. I fear it like I fear drowning or like I fear jumping out of an airplane without a parachute. It's painful in a deeply intense way that can only be described as cruel. My neck, shoulders, arms, and hands feel pinched off, like they are being disconnected and sent into a sharp, prickly sleep. It isn't something that gets better as you lay there (if you can tolerate it), the pain strengthens and consumes you, there is no rest. Another difficult element of sleep is my feet. They both swell and the bottoms of my feel begin to feel hot and burn, they sting when I try to walk on them after laying down for a few minutes. There is something about having my feet upright, out in front of me, that upsets them. My ankles swell, causing additional discomfort...as if they are cheering on the pain in my feet. So, I create a mountain of pillows on my side of the bed and sit up until morning. Every night. Sometimes I will sleep until noon (those are really hard days but rest was needed) and other days, I am up at six or seven o' clock, those days tend to be a little better because I wasn't laying still as long. Confusing? Tell me about it!

Today, I slept until noon. It is now 8:30pm and I am just now gaining the confidence to make my hands do something. I couldn't shower today because the water hurts my skin. My symptoms are growing and gaining in numbers. I find it very difficult to inform my doctors of everything that is going on because, without writing it down, I can't remember. My memory is in such shambles that it amazes me sometimes the things that I forget. My memory used to be strong and dependable but it does fail me constantly. My hands burn today, severely. Touch is difficult, function is worse. My neck seems immune to the pain pills, nerve pills. I am unable to look up or sideways. Everyday, my body is communicating that it is time to prepare for surgery. Sooner rather than later. Although it has been less than a year since my last surgery (November 2013-Cervical Spine fusion), it's time again to go under but this time, for decompression and shunt placement. I will have two shunts from C1 to C5.

If you have syringomyelia, and you are one of the unlucky ones who has to deal with constantly growing and new forming syrinx's, you may be able to understand that I can feel when there is a problem in any area of my spine. There's pressure, pain, loss of feeling in new area's of your body. Maybe your bladder or bowel will begin to malfunction, maybe your internal organs will be affected, your skin will be sensitive, your head will hurt, vision will become blurry, this is an endless list. Because, what I have learned, is that this illness does not come with boundaries. This is an autoimmune disorder that always leaves the door open, wide open, so that other AI disorders can invade, increasing the symptoms and the need for understanding.

My emotions set in a long time ago and I am very touchy about how others treat me, or don't treat me. I expect understanding and support, like anyone else. I need more help than ever but try not to show all of my weaknesses, I'm not ready to cave in and let this thing interrupt who I am...inside. But I express my fears and I cry...for myself and my family.

Thank you for reading this blog. I appreciate your time and effort in understanding, hopefully you learned something about what I am going through and about this illness that is running over me like a freight train that's late to the depot! If you are someone who has been diagnosed with syringomyelia,
are someone who cares for another with this illness, or are just curious...please leave comments, questions, share your story...whatever you feel.