Painsomnia...it exists

Last night was a long, painful, sleepless night.


In the world of chronic pain sufferers, this is referred to
as, painsomnia: insomnia due to pain. On these nights, my dreams are so vivid and real which always seems strange to me since I don't sleep for more than an hour or so at a time. Last night, I dreamt of death. It wasn't mine but I could have prevented it, I was preoccupied. I woke up in a jolt.

I don't know much about dream analogy, however, in considering my thoughts and choices lately...
I think that dream was about the death of who I was, "my past life, before the diagnosis", and my preoccupation was with my current choices...to move on, to choose life and my dreams over hanging on to a life that is no longer an option. After four years, I really feel ok letting that part of me go, I feel as if I have a new set of chances to take and I am not afraid to face them.

Do you have issues with painsomnia? How do you handle it? Have you found a way that allows you to rest through the pain? Personally, I have to get out of bed. The pressure against my body, when lying down, is just too painful and effects me physically, mentally, and emotionally. I will spend the rest of the day nodding off from exhaustion and hoping that tonight will not be a repeat of last night.

Have a good Sunday and do something that makes you happy!

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


((((Gentle Hugs))))



Monica Reents

Holding on to 'Yourself'

Hello!  How is everyone feeling?! I hope that each of you is doing as good as possible and that today is one of the good/better days. I'm struggling with this cold winter weather, as I'm sure most of you are. If you have chronic pain, you may not enjoy the winter months, as the cold wrecks havoc on your body. If this is the case for you, I'm very sorry, I know how hard that can be.

Having an autoimmune disorder has definitely changed my life. In every possible way. Many of you understand what I mean. The onset of symptoms. The search for doctors, consultations, and testing. Multiple opinions. The diagnosing process. Treatment choices and trials. Annual follow ups. Pain management. However, for me, the most difficult part is the day to day living and the constantly symptoms. Just as you are able to get used to your pain level (yes, it's common to become used to feeling pain. It's unfortunate, but is part of life for someone with chronic pain)...something will change, we may never know what it is, but everything will flare up. No longer able to work, I have had to find other ways to spend my days. I was a single mom for thirteen years prior to marrying my husband in June of 2011, so I worked and supported the two of us, went to school, took care of my house, was involved in my son's athletic events, and his education. I was a very busy person and that is the way I liked things. I rarely sat down to watch television. I usually didn't even go to sleep until two or three in the morning, even through the week. Now, I sleep more, even though I rarely feel rested. When I get up in the morning, I love watching Criminal Minds while waiting for medications to either take effect or not, then my writing day begins. Writing saves me.

I've learned that finding your own pace, keeping it, and making adjustments when necessary are the keys to getting through the day without causing yourself too much extra stress. When your mind and body are stressed, the disease(s) takes over and becomes intense emotionally, physically, mentally...it doesn't seem to let up. For me, this lasts for days. For example, If we are having people over for dinner or one of the kids' birthday, I want my home to look nice and be clean, so I will spend a few days before getting things ready. If I push the vacuum, sweep the floor, dust, do laundry, etc...any of those things are murder on my neck, shoulders, head, arms, hands...many things will end up being left undone. So I have to plan in advance. I can only do one of those things a day, and it will take all day, and I won't be able to do any of them the day of the event, that's saved for showering, cooking, being social. I include showering because even that has become a chore, washing my hair is a frustrating time for me (but I will NOT cut it). After the event, I'm exhausted, and will spend the day after resting...maybe two days. This is kind of a break down of how I use my spoons to get through the holidays. That only makes sense if you have read the spoon theory, if you haven't, I have added the link, it's a must read for anyone with chronic pain.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Trying to be yourself, with a disease that has its own agenda is no easy task. I have been on the job for four years and have been doing a lot thinking lately...in the beginning, I was terrified! I got online, read everything about syringomyelia that I could find because my doctors didn't really know that much and I didn't like what I was finding. I decided that the best thing to do was accept what was happening and live the best and fullest life possible. Well, now I only believe that to be half right. I was allowing my illnesses to have control, to make decisions, and to ultimately plan my future. I was 34 years old at the age of diagnosis and had only been married for about three weeks; and now this 'thing' was stepping in, taking my job, my freedom to drive, many other abilities that I took for granted were robbed of me and I wasn't even aware what I was losing, all I knew was that I couldn't stop it. Now, I have had time to sort of mull things over, get used to my body changing at a heartbeats notice, I've had a chance to set my mind on a different kind of future for myself, and to learn about the kind of person I really am when life handed me lemons. 

I have always had a passion for writing poetry and fictional stories, I've just always kept them to myself. Life has been so different since my diagnosis, and I have come to the conclusion the some of my goals needed to change along with my life. No longer able to work outside the home, I decided to use my time to do something that I love, so I sent back to writing a couple years ago and I love it! I never go anywhere without a notebook and pen. I had a poem published last year in the Cogs in Time 2 anthology and I will publish my first book this year, it's due to release in late June. I'm so thrilled!! I honestly feel more like myself when I'm writing, than when I'm doing anything else. The creative side of me is able to be free! My disease may have control over a lot of things, but I want to control the way I live and the way I allow my heart to breath. I am ready to take the reigns back, take a few chances, go out there and LIVE! When I have a bad day, or days, I will stop and care for my body, otherwise, I must trust in myself, in my doctors, my family, Bentley (my dog), God, science, support, friends, and medications to help me live as full a life as I can possible imagine. 

If there is anything that you would like to see me discuss in my blog, questions, concerns, comments, etc...I'm happy to do my best to answer your questions.  :)


I wish all of you a good day, a good night, gentle hugs, and dreams come true!


(((Gentle Hugs)))

Monica

You can also find me on:
Instagram, Monica Reents, my screen name is monicar. writer .
I take pictures of the everyday things my illness effects and post them so others might find some understanding.

You can find "My Journey with Syringomyelia" Facebook page here: https://www.facebook.com/pages/My-Journey-with-Syringomyelia/1488444181379226?ref=hl


I am also on Twitter: @monicareents625  https://twitter.com/MonicaReents625

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.

Paralyzed by Syringomyelia

Having a hard day. I slept until 11 am, now it is almost 5 pm and I am still in my pajama's...I hate days like this.  My joints feel "antsy", "achy", and my skin is sensitive.  I don't feel comfortable in any position...makes me feel broken.  My day is wasted. Nothing accomplished.  Nothing feels reachable today.  Taking a shower feels like my limit.  Syringomyelia sucks. My days are either tolerable or completely intolerable. I always feel bad for my family on these days because everything falls to them...as if everything inside of me comes to a halt, paralyzed. Thankfully, my husband is patient and always seems to understand. He saves me. 

Today's post is short, to the point. It's a bad day.  Another one.  If you deal with chronic pain then you can understand what I am dealing with. Days like this make me want to get the surgery over with, get through the hell of recovery, and pray that I have some relief. 

Take care,

Monica

Syringomyelia...keeping on...

Syringomyelia has not been kind to me.  It is an autoimmune disorder (AI), which means, it leaves the door wide open for all other AI disorders. Sigh. 

If you have read any of my posts, then you know that I have several diagnoses: Syringomyelia, fibromyalgia, arthritis, asthma, cervical degenerative osteoarthritis, kyphosis, and the latest is a thyroid disorder called hypothyroidism.  I honestly had no idea that anything was wrong with my thyroid. But now, looking back, I have had symptoms for awhile and just simply, overlooked the symptoms.  As you can imagine, I have new symptoms all of the time and it has become easy to take note of the issue, move on.  In this case, I went to the dr. in October with some swelling problems in my feet and ankles, nobody knew why...now we know it has been my thyroid.  So, I have worked in another new medication. I pray that my levels are better next month.

Two weeks ago, I went to my neurosurgeon for another  MRI and exam because I have had increased pain and pressure in my neck and back of head.  Although I have a shunt at C5, there is a new syrinx (fluid filled sack) above the shunt and it is quite large, new since December 2013...I have to have another decompression surgery, laminectomy, shunt.....................the recovery of this surgery is pure hell. I am scared. Nervous. I have not schedule the surgery yet because he says that he wants to do it when I am ready, when the pain is no longer tolerable, or (after my next MRI) the syrinx changes negatively.

Every time I go to the Dr. I am diagnosed with a new illness, new medications, new...new...new...

On a positive note, I am having a wonderful weekend with my husband! I love our alone time <3

He understands that I have to have down time when I wake up because the pain is just incredible first thing in the morning, so our days start a little later than he may like, but I'm thankful for his patience.  I have slept until 11am most everyday this week, which is terrible because my day is just getting moving when everyone else is winding down.  I certainly don't choose to sleep my life away. Today I was awake at 7am!!! 

Thank you for reading, supporting.  If you are affected by chronic pain, please know that there is still a way to continue on, even when the pain makes you want to quit. 

Take care!
Monica

SM Struggles on Monday

Good morning! I hope that everyone had a great weekend and has been able to start their week off on the right foot. I've had a slow start...this isn't news to me or for anyone who knows me. Typically, I can spend the first 3 to 4 hours of the day just trying to get moving. Being in bed all night leaves me very stiff and in pain when I wake up. It's a yucky way to wake up.

This past Friday night, I was in the kitchen and hit my left hand on the corner of a cabinet, it hurt so bad! I now have a small scrape on the back of my hand just below my pointer finger...no big deal, usually.  A nerve must have been hit because I have had terrible pain all of the way up to my shoulder and have had little use of that hand since. It's frustrating. Maddening.

I feel exhausted and this rainy weather we are having isn't helping...this overcast sky and slightly cool temperature is perfect for napping. I absolutely love spring and fall!  The temperatures are perfect and the way everything  in the environment changes color...it's gorgeous!

I have an appointment on April 18th with my neurosurgeon for an exam and discussion about the increased pain and pressure in the back of my head and neck. It creates so much sensitivity. I have doubts that anything will be done at this appointment...but, I am not even sure what he could do for me.

At my last pain management appointment, we discussed the effects of my medications...specifically my nerve medication, Gralise. She asked if I thought they were still working for me. I have been at the max dose since I began taking them and I really couldn't give a definite answer. Her solution was to discontinue that medication. I have 2 more days before I am fully off of them. It hasn't been too bad but I can tell that I definitely need to replace it with something and we have decided to try Lyrica. I hope it works. Like anything else, it has pros and cons, works better for some than it does for othes...

Take care, stay healthy, and follow your dreams!
~Monica