Hitting the Wall

I feel as if I have hit one of life's brick walls, head on ...my legs are left dangling on one side, while the rest of me is helplessly hanging upside down on the other side. Too high for anyone to see my predicament, or to hear my pleas for help. I'm sure that there are those of you that completely understand this analogy. I wish you didn't.


Being stuck in life is normal (at times). I think everyone gets to a point where things aren't working out and what they are doing is getting them no where. However, there is an event that will come along and place you where you deserve to be. Rewarding your patience and hard work. This is how one grows. Perseverance can lift you well above my brick wall.  However, I feel stuck. It seems that the biggest obstacle for me to gain control of is my chronic pain. If you suffer with chronic pain, you know that most days revolve around keeping it under control. It decides what you can and can't do. My mind is not exactly wired that way. Some say that I am stubborn. Maybe so.

You may be wondering where this is going ...this is the stuff I was thinking about at 6:30 this morning. I was laying perfectly still beneath my favorite blanket, wishing for a distraction from the pain that was coursing through my body, when I saw lights coming on and heard the shower running. My family was awake and ready to start their day; my husband and son were off to work and my daughter was getting ready for the first day of her sophomore year in high school. Everyone had a place to be. Someone, somewhere was expecting each of them. And here I sat. No where to go. No one was expecting anything from me. So different from four years ago when I was rushing out the door to get to work on time, seeing patients all day, and then coming home to do whatever needed to be done. I am still needed by my family, I help them whenever I am able, and have things to do all day. I rarely sit and watch tv, I don't like soap opera's or most talk shows. I prefer to read and write.

For some reason, today was strange watching everyone leave. I wonder if they think the opposite of me, how it's possible for one to stay home all of the time, with no where to go. It is not easy. There are no other options. I have accepted this, but today felt out of place. I am not looking for anyone's pity, I am only sharing my thoughts.

I had had a rough night, I only slept from 2am to 4:20am. My pain level was so high that I couldn't stay in bed (laying down is horribly mean to my body), so I grabbed a blanket and headed for the Lazy Boy in the living room, along with my constant companion, Bentley. Only to sleep for 30 minutes. This could explain my feelings, a lack of sleep always creates interesting thoughts. 

*~*~*~*~*~*~*~*~*~*~*~*~*

The life of a spoonie is what you make of it (mostly). I stay home, rarely drive, quit my job, I have been declared disabled (I'm only 38, I was 34 when this began), and I take strong medications to cope with my illnesses ...not the best handful of facts, however, it could always be worse! There are so many people who struggle to eat, have a safe place to lay there head at night, to pay bills, to care for their children, there are those who struggle with addictions, those who have fallen into the hole of depression, etc....this list goes on and on ...I may be in pain all day everyday but, I am still able to look around and see that I have so much to be thankful for. I've taken negatives and found a way to make them positive. Having to quit a job that I loved was difficult ...having a husband who supports me through everything (positive), using my time at home to realize my long time dreams of having my writing published (positive), healthy kids (positive), a home (positive), a loyal dog (positive), great friends (positive), family (positive). I may lack sleep, but the things that I will create in my writing today will make that a positive, too! Woot!

I also have days full of sadness and depression. Who could live with such horrible chronic autoimmune diseases and not have some level of depression?! The positive here, these days show me how good all of the other days are.

So, while my feet may be dangling from this wall, preventing me from walking forward for the moment ...I looked around, noticed how much closer I am to the sky. I'm keeping my finger pointed toward heaven and my eyes on the stars.

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

Monica Reents                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   

Overflowing Spoons

 

Hello fellow spoonie's! I hope that today is being good to you :)  I know that holidays can be very difficult for anyone with chronic illnesses, it can bring stress, tension, headaches...increasing our daily symptoms. I don't know about all of you, but I usually pay for active days, for several days. Making it very difficult to look forward to the holidays and all that comes with them. Don't get me wrong, I don't dislike the holidays, but they are not an easy time.

 

I have been having trouble with loss of feeling in my neck, shoulders, arms, hands, torso, hips, and legs. It's a frightening thing to wake up in the middle of the night because your arms are painfully asleep, your hands won't function at all due to a total lack of feeling...I go through this every night. Something happens when I lay down. It's very hard on my neck and head. I can feel it down to my toes. It feels as if my inner universe has shifted, when I'm sitting, I can no longer cross my legs because I lose feeling almost immediately. I am unable to raise my arms (washing my hair, holding the phone to talk, combing hair, etc...arms up...). It's insane how quickly my nerves react to movement and all feeling is gone. I have been weaning off of Morphine after taking it twice a day for the past couple of years, I knew that I would 'feel' more of what is going on with my body but this is ridiculous!! My pain management doctor wants to try to place me on the Fentanyl patch, however, I am not so sure about it because I hate feeling stoned...I'm not prepared to lose more days of my life than I already do. I'm thinking about staying on Morphine and changing the Dilaudid. I'm vey fortunate to have a team of doctors that respect my opinion and listen to how I feel, I know my body and what I can handle; fifteen years of medical work and training has been a lot of help in my own healthcare. As you all know, you really have to be your own advocate and remain persistent in order to get anywhere in this battle. Is it any wonder there is so much depression tied to chronic pain and illness?

 



Electromyography

Last week I had an EMG, electromyography. I did not enjoy this test at all, nor was I able to complete the testing. My neurologist was looking for the possibility of having crushed nerves, pinched nerves, carpal tunnel, or something else that would possibly be causing my arms to lose feeling. I was told before testing that if all was normal, then it was caused by my syrinx and there would be nothing they could do to help me. I knew they wouldn't find anything but I had to know for sure. I'm glad that I had the testing done even though it was painful as the testing become progressively more intense. I was unable to tolerate having the needle portion completed on my left arm, he wasn't finding anything anyways and I was crying...enough was enough. The electro shocks were intense, I had to breath deeply and look away, it felt like my bones were being prodded!
 

 







 



 

 



 

 

My results came in the next day, everything was normal. The syringomyelia is progressing and there is nothing they can do but help me control the symptoms. Sigh. I'm know there are so many of you that know the frustration, fear, pain, depression, anger, and acceptance (to maintain sanity).

 

What spoons I have left, are full. I am doing everything I know to remain positive, strong, and focused on my goals. Not to seem morbid, but I do have a 'Bucket List'. It is more of a 'Stay Life Focused' list. I don't want these illnesses to swallow my life or my love for life and what it has to offer. What is your biggest fear? Mine? I am terrified of becoming paralyzed and that my last day with feeling will have been spent doing laundry, dishes...nothing. I'm only being honest.

 

Well, I appreciate your time and your visit to my blog, it truly means so much <3  I enjoy sharing my story and I would love to hear yours. This journey we are all on is not an easy one, the bumps are rough and jagged, and often leave painful bruises- emotional, physical, and psychologically. Understanding each other is the best we can do for each other; because unless you have it, you can't fully get it.

 

Please take a moment to answer the two polls I have created on the sidebar, they are to help me see who is reading my blog and how I can offer better information to you. While you are perusing the sidebar, there is an area to insert your email address if you would like to have 'Chronic Illness Has a Face' delivered right to your inbox; I would greatly appreciate your follow :)

 

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

 

(((Gentle Hugs)))

 

Monica Reents

 

**To find me on Facebook, Instagram, Twitter, Google+, Goodreads, and Pinterest, all you have to do is scroll to the top of the page and click on the links beneath the title and they will take you directly to my pages. Thank you!!**

 

 

 

 

 

 

 

 

 



 

 

 

 

 









Let's make this life a little easier for ourselves!

Today was such a beautiful day, I couldn't believe it was almost 70 degrees! I would love to have been able to be outside enjoying the day but we were busy trying to get things ready for the kids sleepover and cookout. Of course all of this is a struggle for me, but I do my best to hide it...except for the asthma attack that hits while I'm drying my hair. I was able to get it under control, but then my head began to hurt so badly, I felt that I wasn't going to win no matter what I did today.

My neck feels like it has a pinched nerve. However, rather than effecting one side, it catches on both my left and right sides; causing excruciating pain in my head, neck, shoulders, and down both arms and into my hands. Along with this wonderful new symptom that prevents me from raising my arms, my arms fall asleep all of the time; not just when I raise them, but when I use them. Period.

So I have been doing some reading this week on the World Arnold Chiari Malformation Association website, I found some information that I wanted to share about ways that have been found to help around the house. I don't know about any of you, but when it comes to chores, I pay for anything that I do with several days of misery. I hope that you can find something helpful, If you have found ways to do things that make your life easier, please feel free to share it in the comments, I'd love to hear from you!

http://community.pressenter.net/~wacma/pamshints.htmenjoy

I know that I have to set limits for myself. I can only do one "house chore" per day. Sometimes that chore is my shower, if it's a bad day...The old me would do everything in one day, get it over with, and have the rest of the week to enjoy a clean house, my new normal, means picking and choosing new priorities. If I don't feel good enough to hand in a spoon and do something around the house, then I don't.

I am writing as much as possible. My mind never stops creating! I'm constantly thinking about what my characters should be doing, new characters, new story ideas, new ideas for poems, and it is rare to find me without a notebook in hand :) I'm excited for my book to release in June. Nothing makes me feel more like "me" than when I am writing. Have you found your souls happiness? That "something" that makes you feel whole. It certainly doesn't erase my pain, but for just awhile, It's not the first thing on my mind.
Although we live in pain, each of us still have so much to offer this world, YOU ARE UNLIMITED!

I always try to give myself the choice of having a better day than my body may be willing to provide. But I wasn't able to do this until I found some level of acceptance for the illnesses that I have, the pain that I endure, and the future that is unknown.

I wish you plenty...love, understanding, comfort, and dreams come true!


(((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