When I was pregnant I always prayed that my babies would be healthy, and have ten fingers and toes. I had so many miscarriages after my son was born that I never thought I would have another baby. When I was pregnant with Missy, I knew it would be OK. I prayed that she would just make it the nine months and be born. I didn’t care if she had 9 toes, 6 fingers… hell, I just wanted her to be born. I would deal with anything as long as she made it into the world. I only prayed once to GOD when I was pregnant with her, and that is what I said, “Just let her make it 9 months and be born and I will handle whatever you give me.”

Last year during the cruise contest I got some ugly, mean messages. People told me I caused Missy’s MS, and it was my fault she had it. I got to thinking…maybe in some way they were right. Maybe I should have prayed more when I was pregnant. Maybe I should have said, “GOD make her healthy.”  Maybe my deal with GOD caused her MS. Maybe he was showing me that I got what I wanted.   Read more…

I think there is some kind of pattern to when I feel like I have the capacity to write something. It has to do somewhat with where I am in my chemotherapy cycle, right now I’m in an off week…coming to the end of an off week. Last time I wrote I was just at the beginning of a cycle, so still in the “wellish” feeling stage. I really must keep a log of how I feel from one day to the next, I wonder if there are patterns and predictability?

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Last I wrote I had just been admitted to the hospital. I never ever felt ill. Never even had a fever. The second time they took a culture, I showed a gram positive bacteria, but that was later suspected false. Then, on Sunday the 28th the PA Nicole called and said the next set of cultures showed another gram negative, and asked if I felt well. Well I didn’t. But my symptoms were completely unusual, and inexplicable. The truth is I didn’t know how I felt, the only way I could describe it was: I feel like I am burning from the inside out, but I don’t have a fever. Read more…

Last night I told Missy why I am so happy. I told her why everything is OK and why I am not scared of Alzheimer’s anymore.

One of my good friends died a few weeks ago, they wouldn’t let me go see her. The nursing home wouldn’t let anyone but family in because of the flu epidemic going around their, but I talked to her on the phone. She told me, “Barbie, I’m going home. I’m so so happy. I know in a few days I am dying. The doctors told my children and they are all here, my grandchildren are here…we have had a beautiful few days…but I told them I am so ready to go home.”

She told them to call me. She wanted to tell me that I would be OK. She told me how wonderful her heart felt, even though she was in pain and having trouble breathing now. They had taken off her oxygen so she could talk to me. She told me, “Barbie, its beautiful where we are going, so peaceful, and, oh I can’t wait to see my husband and my mommy and daddy…my sister Ruthie and brother Tommy….and hold my baby girl that died at birth.”

“Oh, Barbie,” she said, “I will be there when you come. Read more…

Old age comes so quickly. One day you are working, having children, cleaning house and then you wake up one morning and poof – you are old, have Alzheimer’s and have to have someone do everything for you. I sometimes think, “Oh I wish I could go back to one of my worst days when I was younger.” Because now I know it wasn’t really a worst day…it was just life.

Yes, old age comes so quickly. I tell everyone: don’t put off anything, surprise your mate with something that they would never expect you to do, do something for a stranger, tell someone they look beautiful today, whistle a song, sing to someone, dance in the kitchen.

And the most important, look your children right in the eye—make them look at you—and tell them, “I love you, forever.” Make them say, “Oh Mom,” or laugh, or tell you “I love you back.” But, make sure that they look into your eyes when you tell them…because one day, they will have that moment, and yes, they will remember. Read more…

Apparently, I have a nasty bacteria (Gram Negative-bacteria) that will kill me if we don’t kill it first. I feel fine, so I think we’re on top of it. It makes me feel great that Sharon, the nurse who spotted my erratic fever on Friday followed through and took the cultures that revealed the bacteria. And I thought it was just my nice woolen cap overheating my ears!

Even though I’m back in the hospital, my spirits are high and I’m feeling better. I decided to go ahead and have a feeding tube just to help me get those extra calories while I’m sleeping and to take the pressure off of worrying about food all the time. I’m a worrier. I can’t say having a tube up my nose is the most comfortable thing, but it is a fashion statement of sorts. My whole appearance these days is a fashion statement: I’m a cancer patient. No hair, no eyebrows, no eyelashes, tube up the nose and looped over the ear, chubby steroid cheeks, geeky hat, swollen feet, no butt, chicken legs, tri-catheter. I’ve moved from despair to comedy. I just couldn’t look much more ridiculous. My ideas about my outward appearance are certainly radicalizing. Read more…

I’m just taking a guess. I never met him. But Robert Thornton is probably one of those guys that you meet every so often because, as it turns out, he is a humanitarian. Sharon, his girlfriend, had a stroke on April 4, 2012, and as a result of the stroke, developed, among other things, a subluxed shoulder, common in stroke survivors. She had severe pain that was caused by the misaligned shoulder. First, a little history on subluxation so you can understand what Robert did.

Taking all the medical mumbo-jumbo out of the picture, the shoulder joint, a ball and socket formation, is the most flexible of any joint in the body. It also makes the shoulder the most unstable joint. In a subluxed shoulder, popular wisdom, in plain English, explains that the shoulder joint’s failure of the socket to completely cover the ball of the upper arm bone makes the shoulder reliant on soft tissue instead to hold it in position. When the upper arm comes substantially out of the shoulder socket, it allows for less mobility, and subluxation results.

With a shoulder subluxing, the patients sometimes feel a popping sound as the ball joint moves out of the socket then returns. Read more…

To do it all over again, in my life, would I change anything?

Oh yes, some things…but over all…no. I would correct the stupid mistakes I made, and spend more of my time with my family…go on more vacations, spend time that I didn’t think I had with those that I miss the most now. Surprise them more.

To do it all over again, I would make love more, dance more, just walk around the block more…I would sing in front of people not caring what they think more, and I would yell at the top of my lungs how much I love my husband and my kids more.

I would speak out more for those I didn’t…and I would make sure that everyone I loved knew it…

But mostly I would love me more, pat myself on the back more, look in the mirror and say, you did what you could, the best you could. Good job Barbie. And I would buy myself flowers, just for the heck of it. Just for me.

To do it all over again…oh boy, oh boy…to know what I know now… Read more…

This is a brain. It is also the unfortunate outcome of a baby whose mother experimented with cocaine, resulting in a premature birth and a bleed in the baby’s brain. A bleed in the brain means the baby had a stroke. Hey! Wait a minute! Babies and strokes don’t go together, or do they?

Note: for all you baby-makers out there, I’m not trying to scare you from having kids. This post is just a dose of reality.

You probably don’t know the name Duncan Guthrie. He started a charity in 1952 for his daughter, Janet, who had polio, and he was determined to find a cure for the disabling disease. With money funded by the charity, research, in time, led to the first oral polio vaccine which wiped out new cases of polio in the UK. Now called Action Medical Research, the charity encompasses so many other afflictions, and that leads us to babies and strokes.

In 2009, Action Medical Research estimated at least one baby out of 2,300 in the UK born full-term were victimized by a stroke. These strokes often were unexpected at the time of birth or before, i.e. some developing babies had strokes in utero. The researchers didn’t know if the babies, who are now barely three years old, had trouble using language because they hadn’t matured to the point where anybody could tell the difference between a three year old saying gibberish or not. Read more…

I found Mom’s Christmas list, she had the nurse write it out for her.

1. Try and make everyone happy
2. Give hugs
3. Tell those that I love how much I love them
4. Take a picture in my mind so I never forget

Then at the bottom the nurse wrote, “Oh how I love this woman.”

Doesn’t get any better than that does it…so that is my Christmas gift from my mother. When I get crazied over the next couple of weeks, all I have to do is read this little piece of paper. Read more…

This is the Angel Card I drew while I was visiting my sister. These angel cards are eerily meaningful. Whether or not they are predictors, or if they just happen to give you the nudge you need when you need it—well, I guess it doesn’t really matter. Crystal had the news I needed to hear, when I needed to hear it. My wonderful sister Kim framed this card for me.

I have energy. Its not long, long lasting, but it is palpable. My strength is returning. Yesterday, while walking up an incline, I felt the smallest stirring in my glutes. I may get my butt back yet!

Yesterday Randin and I hired a chef to come a few nights a week to cook, (obviously), but also to instruct us. This woman, Dawn, has also experienced the terror of low, low weight. She’s been to 85 and back, and so knows what I am up against. I really believe she can help me through my weight gain, to do it healthfully, and most importantly sustainably, intelligently, and lovingly.

Yesterday was also a chemo day. The doctors were surprised that my blood counts recovered enough to receive it. They tell me there is nothing I can do to effect my counts, that it is simply something that happens on its own. Read more…