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

 

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