I am a 36 year old married mom of 3 who was newly diagnosed with POEMS Syndrome in Oct 2010. I have had 4 cycles of Revlamid, Cytoxin, and Dex and am heading for a SCT in Feb 2011. Would love to connect with others with this crazy, rare disease!
His eyes look into my soul, as I feel his heart beat against mine. Our kiss full of passion like a burning flame, his touch cool and relaxing. His hair curly and wild, his eyes sparkle in magical wonder. Hold his hand close to my heart, keep his image in my head. Give him my...
my husband was recently diagnosed with a plasmacytoma on his left shoulder and atypical poems syndrome. He has peripheral neuropathy (cant walk or use his hands), has an enlarged spleen, and had edema. He finished his month of radiation and the edema is almost all gone. the...
I said the night you left me,Nothin' worse could ever happen,But seeing you with someone else proved that I was wrong.And when your eyes met mine,I knew that you were gone forever,Along with all the reasons , I had for hanging on.I'd be better off in a pine box,On a slow train...
I have been divorced for several years after a 25 year marriage. I have three grown sons and three grandchildren. In October of 2007 I was in Mississippi on vacation. I woke up one morning and while taking a shower I felt a large hard bump on my left clavical bone. This was...
the darkness creeps in.
The creatures of the underworld roams.
Attacking the innoccnt,
killing their soul.
The moonlight glitter on their faces,
their eyes gazing.
Their heart beat stopping,
and their blood as cold as ice.
Their hearts black as coal,
I have to express how excited I am to find people that we can share our experiences with. It's one thing to talk to people so one can vent, but it is another to share and vent with people that are having similar experiences. It's feels kinda "lonely" (for lack of a better word...
My husband is currently in the Hospital after being admitted on Oct. 5th for a stem cell bone marrow transplant for his Poems Syndrome. He's had the 'GO HOME' card dangled in front of him for a week now, but has experienced some complications. As I write this, he is having his...
The snow falls gently on the ground,
the cold air sweeps through,
the sparkling christmas lights twinkle all around,
small children playing with snow,
making snow forts,
or throwing them for fun.
The cold snow brings love,
young people kissing in the snow,
laughing and playing...
Two weeks ago, my husband's primary care physician preliminarily diagnosed with POEMS Syndrome. We were referred to the Mayo Clinic. Just today we met with the Mayo Clinic specialist who confirmed his diagnosis. He's young. Just 38 years old. He has multiple diagnoses in in each...
49 years old. On September 2012 started with progressive serious problems in my health. Weakness on my extremities, drastic loss of weight , foot drop, hyperpigmentation, a lot of stress for not knowing what's going on with my life.
After 4 months and many many many tests...
Hug him tight,
never want to let go,
never want to lose,
the love we feel.
Always questioning his thoughts,
always thinking about him,
and how much I love him.
Kiss him softly,
hold him close,
ignoring the rest of the world,
just us and only us.
money, friends, even family,