Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, February 17, 2011

You learn something new. . .


You learn something new everyday (at least I try), and you never know where that jewel of information may come from. 

Most often, it's from the least expected place. 

Selling jewelry at pink pint night Tues., I was chatting with Faith, a friend and founder of The Monadnock Women's Network (MOWO), a non-profit organization created to empower women in achieving their goals by partnering with other members of the local business community and non-profit organizations. 

FYI- I love this foundation. Take the time to check it out: http://www.monadnockwomen.com/


We were talking when she said, "Can I ask you a personal question?"


"Of course," I thought, "That's what I'm all about." 

Then, to my surprise, she asked if I was taking prednisone.

This has been me when spending the night
at a friend's home.
"Yes!" I wanted to scream. She could tell. She knew my face was swollen and my hairy jaw was a side effect! 

I was so relieved that she could identify that I was a steroid induced crazy woman, not my normal self.

Faith then proceeded to explain to me that L-glutamine helps stimulate adrenal function and that with a prednisone taper an L-glutamine supplement should be increased. 

Whoa, what a Godsend of information. I've been taking steroids since Dec. 2009. 

My hope of getting off was squashed when my adrenal glands failed to function, giving me Addison's disease, when I'd gotten to taking only 5mg. 

That diagnosis sent me straight back to 20mg a day. 

My illness last week had my team clamoring to jump me back up to 17mg, but I'm on 15mg now.

Steroids are a double edged sword. They make you feel better. They give you energy by stimulating your adrenals giving you the constant "fight or flight" feeling.

It is great to be energized and productive.

However, it causes muscle wasting, severe weight gain (50lbs. and counting), osteoporosis, and as a personal side effect for me, the return of shortness of breath with an increase dose.

The last symptom is counterintuitive. I think this happens because my lungs have received all the possible benefit from steroids and I now use exercise to maintain their function. The steroids causing muscle wasting affects how my body is using the oxygen, making me short of breath, theoretically.

Are we all following? It's ok if you're not.

Sometimes, I can't follow myself. That's the prednisone too.

 At least now, there's the possibility of help. Wish I'd hear of this before. I'll do my research, but today, I'm off to treatment.

It's fight time.

4 comments:

Anonymous said...

Hi

L Glutamine? Have you seen any medical research behind this. I can't seem to find any. Another question I have is why haven't your transplant doctors already mentioned this. Let us know if you find any relevant info. I'll be looking into it as well.

Monadnock Women said...

Hi Anonymous - I am Faith! I absolutely encourage Hillary to speak with her Dr. first and foremost. As someone who spent 8 years on predisone - I worked very closely with my Dr.'s when coming off of them while taking L-Glutamine. The idea of the vitamin was something I brought to my Dr. and something they (as I had several) too had never heard of. L-Glutamine is an amino acid and can be found in many multi-vits and many protein beverages. Granted, I was on Pred for Crohn's disease - a VERY different reason than Hil, but for the most part (from my understanding), this is why those body building drinks work, the L-Glutamine allows your body to produce more of its own natural steroids. I think if you simply search for L-Glutamine to get off predisone, you may be surprised at the amount of information you find. But YES, Hillary - check with your Dr. Luv u, Faith

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