These will be ONE INCH BLACK bracelets with the above lettering!
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Showing posts with label NF Bracelets. Show all posts
Showing posts with label NF Bracelets. Show all posts
Wednesday, March 13, 2013
Tuesday, August 30, 2011
I'm in Control-Right?
One of the most powerful things most people want in their lives, is control. When we don't have the control, I know for me, the tension and anxiety that comes from that is extreme. Just ask Rich - I can be a terrible backseat driver :)
I know all too well how devastating living with a progressive, potentially terminal disorder is on a person, and a family. How frustrating it can be to hear that nothing can be done or that I have to simply endure my pain. There is nothing more frustrating than the feeling of helplessness.
Not being able to control how bad my NF will get is something I think about every single day. I often wonder if the tumors will get so bad, that my husband will fall out of love with me....Will my looks determine who stays and who goes?
Medically, NF has taken over - it's all over my Facebook page and the hundreds of e-mails I receive from people desperate to get back some of the control that they have lost.
It's easy to get lost in NF. To lift our hands off the steering wheel of our lives in despair, and let it drive us wherever IT wants to go. But that moment of 'easy' turns into a lifetime of hard feelings, disappointment and depression.
Having Neurofibromatosis teaches me almost daily that the only true control I have is how I manage and deal with the things that happen in my life, from tumor pain to taking my daughter to chemo to facing myself in the mirror every mornng.
Keep your hands on the wheel. Hold on tight. The road ahead is full of curves, construction, speedbumps, potholes, falling rocks, animal crossings, and traffic cops. Sounds terrifying, but it's better than letting NF drive you - because it will drive you straight off a cliff.
Who controls NF?
The doctors? The Pharmacists? The Insurance Companies? They all have some control in how we deal with it, but in the end, NF controls itself. The real question is, does NF control YOU?
I know all too well how devastating living with a progressive, potentially terminal disorder is on a person, and a family. How frustrating it can be to hear that nothing can be done or that I have to simply endure my pain. There is nothing more frustrating than the feeling of helplessness.
Medically, NF has taken over - it's all over my Facebook page and the hundreds of e-mails I receive from people desperate to get back some of the control that they have lost.
It's easy to get lost in NF. To lift our hands off the steering wheel of our lives in despair, and let it drive us wherever IT wants to go. But that moment of 'easy' turns into a lifetime of hard feelings, disappointment and depression.
Having Neurofibromatosis teaches me almost daily that the only true control I have is how I manage and deal with the things that happen in my life, from tumor pain to taking my daughter to chemo to facing myself in the mirror every mornng.
Tuesday, August 2, 2011
Here We Go Again!
This week we re-start chemotherapy. A three week break was nice. The Vinblastine, although lower in dosage then the last treatment, has a harsh affect on Bailey's body. She has lost about 15 pounds, and also lost a considerable amount of hair. She has mouth sores, and body aches. Her skin is blotchy and pale.
I think these side affects bother ME, more than they bother Bailey. I see my daughter transforming, it's scary. But, she seems almost unaware of all that is happening...All that could happen. Maybe that's a good thing, I don't know.
The whole world of chemotherapy, is a strange one. Anyone who has experienced any part of this world, knows what I'm talking about.
It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops. Your world morphs into something unrecognizable.
Life becomes all about numbers, and needles. Good days and bad days. High fevers and hospital stays.
Dealing with all this "stuff" is hard for even the strongest spirit. Sometimes, I silently ask God what the point of all of this is. Why Bailey? Why now? And when will we finally see the light at the end of the tunnel?
It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over. How can I keep up? How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?
I guess the answer is to just simply do it....and as always THRIVE ON!
I think these side affects bother ME, more than they bother Bailey. I see my daughter transforming, it's scary. But, she seems almost unaware of all that is happening...All that could happen. Maybe that's a good thing, I don't know.
The whole world of chemotherapy, is a strange one. Anyone who has experienced any part of this world, knows what I'm talking about.
It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops. Your world morphs into something unrecognizable.
Life becomes all about numbers, and needles. Good days and bad days. High fevers and hospital stays.
Dealing with all this "stuff" is hard for even the strongest spirit. Sometimes, I silently ask God what the point of all of this is. Why Bailey? Why now? And when will we finally see the light at the end of the tunnel?
It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over. How can I keep up? How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?
I guess the answer is to just simply do it....and as always THRIVE ON!
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