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Back to the place she knows so well, and welcomed by those who are dedicated to help, but have become family. Tampa General Hospital, where everybody knows her name. It was a simple gesture, saying welcome back on the board in Angel’s room. To a casual observer it may not even be noticed. To me, as aunt of one of the most amazing people I know, that gesture was symbolic of the many years of love, heartache, triumph and hope that we have all shared in the amazing 12 years of Angel’s life.

Angel came into the world  at St. Joseph’s Women’s Hospital, but soon found a second home at Tampa General. She was born with Vater Syndrome, a relatively rare set of congenital anomalies requiring life saving and life preserving surgeries, medications, an amazing and dedicated set of physicians, ARNP’s, nurses, hospital employees and the super hero (thank you for the words my beautiful friend across the pond) mom whose dedication and love help Angel thrive in ways no one could have predicted.

Back in the hospital after only a few days home, I had time again to reflect on how lucky a chronically ill child is to have an envelope of love and dedication surround him or her in an environment that us foreign to most people.

After just a few minutes in the room, it was time for shift change. A nurse that had never met Angel came in. This is rare. Meanwhile a nurse from The IV  team came in put a new sonogram guided IV into her left arm because the one in her right arm was no longer useful. That nurse had cared for Angel in the ICU  many times before. Another nurse stopped by to sit on the bed, hug Angel a few times, talk with the new nurse and reminisce. Even though she
had cared for Angel only a few days before she said, “I remember when you used to make me call you Princess Fiona.”

I had forgotten Angel’s Shrek period, but it did remind me of the day that Angel was dressed in a beautiful dress for her hospital wedding to Diego, a cartoon character she loved so well. 

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So then began the trip down memory lane. Remember when Angel had the sign on her hospital door saying that all who enter must put money in her bank? Remember when we used to spend every Saturday snuggled on the big blue chair watching movies till we fell asleep?  Remember when Angel would say, “be right back,” and walk to the other side of her crib to pretend she was going to the potty?”

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How about all the Halloween parades and the Christmas parties? Or what about last month when the cashier in the cafeteria told Angel she was sorry they didn’t have donuts anymore? Or the time we sat for hours watching her sleep after the takedown of her colostomy or when she sat in her doorway crying, “water” when she was on fluid restrictions and none of the nurses wanted to walk by her room?

Most people can go their whole lives not entering a hospital. Some go occasionally and don’t give it much thought. For some, hospital is a home with extended family who come to know and love each other, know spouses, children, uncles, aunts, cousins and grandparents. For those people, I hope they have a place to go to like TGH. A place where doctors and nurses stay, and care, and keep giving.

“Be glad there’s one place in the world
Where everybody knows your name,
And they’re always glad you came;
You want to go where people know,
People are all the same;
You want to go where everybody knows your name.”

source: http://www.lyricsondemand.com/tvthemes/cheerslyrics.html

Welcome back, welcome back, welcome back.

Love you, Angel.

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I am overweight. There are a variety of reasons for this, among them depression, spinal stenosis, poly-articular arthritis, and an obsession with food as the antidote to all that ails.  It is, as many know, a vicious cycle. Eat, gain weight, get more depressed, eat again.  At some point one becomes numb and develops the ability to look in the mirror and not see, talk to people but not look them in the eye, and become a shell of former self.  That was me.

When my spinal stenosis became so bad that I could not walk more than a few steps, my weight sky rocketed.  Post surgery, I felt well for a short time, started walking and began  one of my many diets – and failed. Within a month, my back started hurting and one of my legs started to become numb and itchy and I was driving through McDonalds every morning to buy a small mocha frappe, no whip (I had the lingo down, naturally), about a million calories a serving.

When the numbness started to become distracting and uncomfortable, I went to see the neurologist, sure he was going to tell me that it was time to go back to the surgeon.  Imagine my surprise when I learned that I had Meralgia paresthetica, a fancy term for compression of the lateral femoral cutaneous nerve, or in other words, I was so obese that fat was pressing on the nerve on the front of my thigh causing numbness and tingling.  I was devastated, humiliated, fat, numb, depressed, and the worst of the FFF’s (a little nickname my sisters and I share). I had hit rock bottom.

How could I have let this happen? What happened to that little girl who only ate to live?

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That’s me in the blue dress, with my cousins on a beautiful sunny NY day.

I am not really sure when I made the change from thin, healthy, happy Marie to the person that I used to make fun of, the one who stands in the back in group pictures and can never find anything to wear. Karma is real. Send it out into the universe and eventually it will return.

Then one day, I saw “before and after” pictures of the younger sister of one of my dear friends. She had lost over 70 pounds and looked fabulous. I decided to take a chance and ask her what kind of journey she was following.We talked for a while and it felt good to admit to the psychological problems I had with eating and weight loss. I laughed until I cried and decided to take the plunge on my absolute last ditch effort at any eating plan before deciding on bariatric surgery. Yes, of course I had considered that.

At just about the same time as I made the decision to start another diet, I just happened to find a set of Melmac dishes I had been searching for on E Bay for almost a year – the dishes I grew up with and felt a need to own again. Funny how thing work. Perhaps there is a master plan.

Dishes

 

The dishes arrived about a week before my meal replacements, in almost perfect condition and almost exactly as I had remembered them.  Much to my surprise, the dishes were so much smaller than the usual dinner plates I have been using for years.  The cereal bowls I remember from my youth are tiny compared to the bowls in my cabinet.  I started to put two and two together – the size of dinner ware and flat ware has increased over the years in proportion to my own weight gain. Coincidence? Probably not.  Nevertheless, I took a chance on E Bay (God, I LOVE that site) and found mid-century forks, spoons and knives to add to my collection.  Lo and behold, they are substantially smaller than the mismatched set of silverware I have been using. Putting two and two together yet?

So now I am on a health and weight-loss journey with the help of an amazing coach, a great support group, a few meal replacements, and a Lean and Green meal on my awesome Melmac plates with my awesome forks and knives with the cool vintage wooden handles. I am re-learning to love the whole process of the meal, not just the food. The dishes are the perfect size for my portion controlled meal, and life is really looking up. If only I had my pastel Tupperware cups to drink my water. . . but I digress. . .

I am about to place my third order for plan meal replacements. I have lost ten pounds, have not “cheated” even once
as there is no need to, and my obsession with food is gone. I have a very long way to go, but the road ahead is clear. I am getting closer to finding me every day.

This is a journey I feel confident about. I could write a book on all the diets I have tried before and why this one is the one that works for me and maybe someday I will.   Accountability is important, but having all the right tools at the right time is even more important than that. Check back in every once in a while if you want to follow my progress. I may even post a picture. Who knows, while finding me, I may be able to help you find you.

 

Although the world is full of suffering,
it is full also of the overcoming of it.
– Helen Keller

 

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Perfect in purple, Angel in the dialysis unit at Tampa General Hospital

 

Background

My niece, Angel, is my sunshine, my inspiration, and one of the smartest and bravest people I know and she is far wiser than her eleven years.  She was born with Vater Association, a group of congenital deformities, among them only one barely working kidney. She had her first major surgery when she was only hours old. From the time she was very little she was on strict dietary restrictions, underwent hundreds of diagnostic tests, several reconstructive and spinal surgeries, long hospitalizations and required a complicated rewp-1458429169699.jpggimen of medicines several times a day.

She began dialysis at age four and was listed for transplant by six.  Angel was on dialysis for eight years when it became medically necessary to move her to the top of the transplant list.  Not too long ago, she underwent a successful kidney transplant and her entire life has changed in ways not many people could imagine.

How things have changed

Angel used to spend at least four hours in the dialysis unit three times a week.  Everything she did revolved around her dialysis schedule and her medical procedures done once an evening at 6:00 pm.  When I asked her how it feels not to have to go to dialysis any more she said it feels “weird and boring.” She finds it hard to fill all that extra time, except for binge watching Netflix. She said food tastes saltier now and she can drink as much as she wants. Her diet is only restricted by raw foods and grapefruits and she is not allowed to eat at buffet restaurants.  She has had chocolate for the first time and found out that she loves peanut butter cups.

Now that she has recovered from the actual transplant surgery, she is feeling much better. She has more energy than she had before and she is looking forward to traveling outside Tampa to amusement parks, fairs and Disney World. She still visits her friends and the nurses in the dialysis unit when she goes to the hospital for labs and for school. Her biggest goal right now is to go to “real school.” She has been going to home-bound school at Tampa General since Kindergarten!wp-1458429212037.jpg

Angel is an inspiration to me every day. She has a bigger heart than anyone I know. In 2010 Angel was a spokesperson for Tampa General Children’s Medical Center for Christmas.

Angel is also past winner of the American Kidney Fund Art Contest and was the was the guest at the Ribbon Cutting Ceremony at the Kidney Walk in Atlanta, GeorgIa in 2012.

Once she recovered from her surgery, the first public gathering she attended was a walk for Colon Cancer at the Al Lopez Park in Tampa.wp-1458448669906.jpg Truly her heart and her love for life  knows no bounds.

When she is out in public and wearing her mask, she wishes no one would ask her any questions.  However, she knows that is not realistic so she has created some helpful hints which you can read about in Part Two.

Looking towards the future

Angel plans to become a doctor in the future.  For now,though, she enjoys watching Grays Anatomy, Super Natural and How I Met Your Mother.  She is busy learning to sew so she can make quilts for the children in the hospital and learning how to play the guitar.  The future is bright and that is no surprise as she remains my only sunshine.

Addendum

Don’t let this article make you believe that this is all a walk in the park. It is a testimonial to Angel’s personality that this all seems so easy. For the second time in as many weeks, Angel again is in Tampa General Hospital, waiting for a sonogram.  Her urine output has been less than expected and she is swollen and a bit uncomfortable. As her mom, Lisa, reminds us, transplant is just another type of treatment, not a cure.