The Patient of 152B

Dear readers, it’s been a while since I’ve shared anything with you.

Sorry for that but, I’ve been feeling weak for some time and all of us know that when we’re weak, we’re weak.  Everything in our lives becomes a colossal task.NYUWork-009

via morguefile

Which by the way got me admitted on Monday for an IVGG treatment.

When I’m in the hospital I feel vulnerable, and a bit lost to tell you the truth.  It’s nice when I hear a resident call me by my name, instead of the patient in 152B.

Most of the nurses who work here don’t really know much of Myasthenia, never mind pronounce it.  Yesterday I had the opportunity of having a young nurse who actually came around and talked to me about MG.

As she was giving me meds and changing my infusion lines, she told me she had never had a patient with MG, and as soon as she got home she was planning on getting information about the disease.

I told her that she was more than welcome to ask me anything she wanted to know.

We had both a nice and educational back and forth for a while, it felt good that she was interested enough to ask.  Awareness is an important thing for MG, few people understand what this is all about.  I thought about the hashtag #HaveYouHeardofMG that has been going around lately as we spoke amicably.

I face so many unknowns after those two bracelets are fixed on my wrist.  One with my name and information and the other orange label that warns nurses and medical personnel that I am at risk of falling.

Thoughts of how things will turn out this time around feed my fears and jitters take residence in my tummy.  Never mind if the people who love me the most in this world try to reassure me it’s going to be okay, it’s never okay.  Although, I do appreciate their love, and the strength they give me along the way.

In a world where patients are treated with dignity and respect as human beings and not numbers or otherwise maybe these fears would be less, but sadly we don’t have this type of healthcare system.  The system that prevails is one where our family can’t leave us alone for a moment under the care of nurses and medical personnel due to crippling fear that we will be neglected and put at risk.

Testament of this would be my daughter running to fetch my tray because they forget to bring it in because I’m in preventive isolation and my food tray is the last to be delivered in the hall.

So, my dear friends today is not a good day for me, however I know and believe tomorrow will be better.  If I loose the ability to believe in this I have lost one of the most important battles we deal with every day and that is never to loose hope.

See you around the corner.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

MG & Flare-Ups: Humbug

Dear readers, when flare-ups come around my life I feel like the MG Scrooge and I just want to say “Humbug”.

I’m not going to write about the specifics of our flare-ups because each one of us will have a different story to tell.  I’d like to humbly share my feelings about these awful flare-ups reaching out to others so we can make the best of it together.

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I hate to feel weak.

It makes me cranky, sad and defeated. The worse part is knowing that my body is doing this to me AGAIN. It feels like I’m punching myself in the face. Ouch!

I wanted to make this point because sometimes other people think it’s easy for me to remain positive and cheery all the time when the truth is I’m  not feeling like that at all.

However being the hopeless believer I am, after my initial “humbug” I come around and begin the healing process once more.  At this point I’m not that interested in healing my body, but healing my drenched spirit. Getting it together and moving forward once again.

Even though my family loves me tons and tries to do the best to support me, sometimes I need to attain comfort within me so I can deal with the issues each relapse brings. I can have them a million times and each one of them is going to be different except for the weakness which all of us know is the common denominator.

Reading and listening to music helps me tons. One of my favorite blogs to read ever is from Cathy Chester,  she battles multiple sclerosis and through her writings I feel better because I can relate to many things she brings to the table.

 

One of my favorite authors is Jane Austin, and in her book Emma, there’s a quote I absolutely love,

“It is well to have as many holds upon happiness as possible.”

For all of us happiness means different things, but one is common to all human race and it’s about finding solace and peace within our lives. Facing a chronic illness takes away so much, that it’s darn difficult not to become Scrooges.

I would always think about the negative whey before bringing any positives into context. Nowadays, I’m trying to retrain my brain, so positive thinking comes always first.

Many times I’ve smirked at myself, thinking, “Who am I kidding?”, but I always come back and try to just collect myself and keep on going.  It’s so easy to give up and so hard to keep my spirits up.

But, you know my dear friends, all of us are a work in progress.  For some it’s gonna be easy, for others not so.  However, let’s hang in there, because like Phil Collins sings, “It’s gonna be all right.”

 Don’t forget to find meaning and purpose in each day, and  to reach out to others. When we give it a try, it’s pretty amazing.

I invite you to come along on my quest for wellness not only of my body, but most importantly of my soul