All posts tagged fibromyalgia

Not Giving Up!

Published September 9, 2014 by Whimsical Fancy & Musings

I gave up on writing for a long time because sometimes I can’t remember verb tenses and punctuation. Also, some days my hands feel like the joints are morphing into marbles. You might wonder why this is so frustrating. Well, I’ve got an associates’ degree in Journalism (I was a stellar journalism student) and writing was and still is my first love.

A few months ago, I found out that I have nine white lesions on the front of my brain. The neurologist said it might be MS, then he determined that it wasn’t MS. Then he said the lesions are consistent with Rheumatoid Arthritis, but my rheumatologist said RA doesn’t affect your brain that way. Some day they well let me know why my brain doesn’t work right anymore, but I’m not holding my breath.

I thought I was going crazy because I was seeing distortions in my vision. The Drusen (sharp crystals) in the nerve cables of my eyes have decided to start stealing my eyesight. I have 56% of the nerve in my left eye, and a whopping 68% in the right eye. There is no treatment to stop it or make it go away.

I am in the middle of a flare of both fibromyalgia and RA. I hate the pain, fighting with the doctors, applying for disability,  and this week, the never-ending tears that have my eyes so swollen I am starting to resemble a walrus. Today, I am going to count my blessings, take a shower, and keep moving forward.

My son came home from the war a bit broken but after a year, he’s starting to laugh and smile again. My husband loves me in spite of my mood swings and almost constant tears. I have one friend who never forgets about me, and our friendship means the world to me. I have a goofy feline companion who stay beside me and head butts me when she thinks I need to quit feeling sorry for myself. I have a roof over my head, and I am still breathing. Time to take a shower because you know what? I am not giving up.


Fighting the “Good Fight”

Published March 4, 2014 by Whimsical Fancy & Musings

“Some Days are Diamonds and Some Days are Stones” is a line from an old John Denver song. I think it describes perfectly how it is to live with a chronic illness.  Some days are so good, they sparkle like diamonds, and then some days are so bad, they leave you feeling like you’ve got a huge stone where your heart used to be. My mission right now is to hang on to those “diamond” days, and keep hoping for more.

It is hard to hang on sometimes though, when it all feels so overwhelming: simple household tasks, wondering if the doctors believe you, waiting on your disability decision, the crippling fatigue, the pain, and many other things, but most of all it is the grief I feel for the person I used to be.  When I look in the mirror a stranger’s face looks back at me.

That stranger doesn’t have much hair left, she’s emaciated with purplish black raccoon marks around her eyes, the wrinkles that used to be laugh lines are deep furrows plowed into the skin from grimacing when there is no relief from the pain.  The  stranger’s eyes are almost hidden because they’re swollen from crying due to the depression associated with Rheumatoid disease and Fibromyalgia.  Wait; I still recognize those eyes.

The irises are forest green with brown edges, and the pupils still have what artists refer to as a “life light”.  That light still burns with a lust for life that comes from having a courageous spirit. I’ve always been a strong spirited woman, and I can’t afford to loose my courage now, even though the past couple of days have left me reeling a little.  Flares (The times when the monster in my body tries to take control.) often do that to me; however, so far I’ve survived them and eventually the flares do come to an end. I am lucky today because the pain is better.

My reflection in the mirror smiles. The woman in the mirror isn’t really a stranger, a little worse for wear and tear as the old saying goes, but it is still me. My physical body will never be the same, still l have my courage, as well as my inner strength.  Grieving for my old physical self is pointless because it only holds me back from the joys of the present.

The sun is shining outside my window and the snow is melting. If I look really hard I can see little bits of springtime green. I don’t know what tomorrow will bring, and I don’t have time to worry about that because right now, all I have is today. Today can still be one of those “diamond” days, if I don’t let my heart turn into a stone.