Emotional Rollercoaster


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When we first realized that we were dying and there wasn’t going to be some magic cure, we became so afraid.  The rollercoaster of emotions has been almost unbearable. 

If you are dying, have you felt that too?

Bunches of pills

Opium and the pain-killers add to problems too, because they are so addictive

Along with the physical illness comes the constant medicines needed to maintain (3 green ones, 1 yellow, 2 pink one at lunch – then drink that down with the tincture of opium,)   Then at lunch a “do-over” with a variation or two along with it that dreaded tinture of opium…At night comes another round of liquids, changing the pain-killer patches, and hoping like heck that we did it all alright.

As the days go on,  we are constantly wondering if we took enough or too much . . .

NONE would be ideal!

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4 thoughts on “Emotional Rollercoaster

  1. I am the parent of two children, one of them is disabled, with a life-shortening, undiagnosed and neuro-degenerative condition, the other one diagnosed with malignant melanoma at the age of 16. Following several minor-ish surgeries we were told he was going to be fine. Since then, there have been more unusual ‘findings’, none of them typical, and absolutely terrifiying for me as his mom.

    Teenagers have such an amazing attitude to life. As far as they are concerned, they are immortal. My son doesn’t talk about “his cancer”. he says he just wants to live his life. He is away at college now, and I worry about him every day. But we have learned, with both kids, that the only way to cope is to take one day at a time. I do the worrying, and leave the living to them. My kids are now 17 and 20, and it really doesn’t seem the “right age” to die, either. There never is a right time. There is no point in asking why us, why them?

    This is the way I try and look at things: I live in a first world country. I have free health care. Because of my daughter’s unusual condition, I was perhaps more aware of risks to my son’s health (various doctor’s kept asking me what on earth made me suspect MM – call it mother’s instinct, if you like), I try and have “manageable dreams”, I try and make memories, both of and with my kids, and for them (or for myself…). I try and find things that make me smile. Don’t laugh, I have started to keep chickens (they are very therapeutic!), I do silly things like breeding frogs for my pond. My health isn’t great (nothing like your health problems, just premature old age issues, chronic pain, fatigue, etc. which limits what I can do, no more dancing, I’m afraid… and I am also only in my 50s).

    I have lived in a third world country and know that my daughter wouldn’t be alive today, had she been born there, so I am grateful that she is still with us. We are able to get all the medications we need to manage her condition, and for that I am grateful as well. I am grateful for my own medication, without which I wouldn’t be able to function (although being so busy with my daughter’s meds I do forget to take mine fairly regularly… and then get very painful reminders…)

    None of this is of any help to you, I know, but I wanted to let you know that there are other people dealing with similar issues out there, who do think about you.

    Wishing you strength for you daily survival

    • Lisa, thank you so much for writing. As I sat here reading your post, tears run down my cheeks – not feeling sorry for myself for a change, but in realization that as you so nicely and sweetly point out – – there are sooooo many people out here facing what seems (and often is) insurmountable battles of life and death. Feeling sorry for ourselves doesn’t help. Your kids sound like awesome and brave souls. You must be so proud of them….and something tells me that you have been an extraordinary good example to them through their years of growing up.

      I love the ideas of your frog and chicken therapy!!!! Thank you – you made me smile today. Take care, and I wish you and your family all the very best for now and in the future.

    • Hi Lisa, was thinking of you tonight. I’m seeing that terrible word in your post – “undiagnosed” and feel your pain. Thank you for being here and for your encouragement. You are a strong mother, and I believe the burden you bear is probably a whole lot larger than can be imagined. Sweet dreams tonight…rest.

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