All I want for Christmas…the wish of all chronic sufferers

December 20, 2010

It’s ok, I’m not really expecting Santa to drop a cure down the chimney when he comes around in a few nights but wouldn’t it be lovely if I could enjoy a painfree couple of days over Christmas and New Year…where I might be able to imagine I don’t have mixed connective tissue disease.

Yesterday I went to my Grandma and Grandpa’s place for an early, family Christmas get together and many of those relatives I haven’t seen since I got sick. The strange thing was, as they asked me how I was doing….I was completely numb. I couldn’t even remember what it meant to be sick. Not because I am better but because I am starting to forget what it’s like to live without pain, without daily medication, without MCTD.

I honestly couldn’t describe what life is like for me, I just told them I have learnt to live with it – and I guess that’s true.

The memories of Christmas and New Year last year are almost as painful as those days were. That was before I was diagnosed and before I was medicated and it was an exhausting, depressing, confusing and painful time.

I am looking forward to this year, because I know how to handle my body now, how to handle my pain and more than anything…I am so thrilled to say goodbye to 2010.

It has been an insane year and I am more than happy to dive into 2011 with an open heart, open arms and an open mind.

To a happy, painfree (for you), hopeful and did I mention happy….Christmas and new year.

Love Princess Naomi 

Have you read my poem The Longest Night: An MCTD Poem?


2 Responses to “All I want for Christmas…the wish of all chronic sufferers”

  1. Susana Basanty said

    Dear Princess Naomi,
    I am happy to report that after so many years with MCTD,
    people have forgotten I have it. Now when they ask how I am doing, they are asking about me the person and not the disease, and I like that. I must tell you though that I am having a really hard time with bursitis and polymyositis and it’s so painful, typing this out is very hard, and I know you are familiar with this pain.
    That being said, in the beginning your family worries and they try to understand your diagnosis and they pray for you to be healed and after a couple years of that, they become silent, because they are helpless in your plight, and have no idea what could help or make you better.
    I have made a point as you have, not to share too much, because frankly when we go in for my checkups I don’t even want to know or worry about what they are looking for next. When I am in pain I don’t want to cry in front of people or complain. Can you imagine, saying ouch, ooww, ouwey every time we turned a key or pulled on a drawer or lifted a bottle or some days when tried to dry our hair, or text our friends on the cell?
    Some times in the early morning hours I wake up and have that brief moment between sleep and waking up that reminds me of being a child warm in my bed and the reflection of the snow outside the window so bright in the very early morning darkness, makes me cozy and almost a feeling of being in a womb, those are my pain free moments. They are fast fleeting and then I wake up to pain everywhere, as if someone came in and hit me with a bat. I pray and thank God for another day, go downstairs have coffee with biscotti and medication, then a warm shower, make up, clothes and I can now handle life again until an afternoon rest, and then seven in the evening when I am exhausted again and repeat my nightly routine of going up to my room to deal with my tiredness while struggling with not going to bed to early so I can get a goodnight’s sleep. Sleep which I call the pancake flip, because the pain keeps me constantly moving.LOl.
    Still I adhere to the idea that when people ask me how I am I answer “I am well” because I am well, my body, well that’s another story.

  2. Bev said

    hey princess naomi —- just like to wish you BUCKETLOADS of magic for the silly season and the newest year, and, you get to make your wishes come true……. :o)

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