Amazing Gracie, the Two-Legged Kitten!!

I read this brief article about Gracie, the Two-Legged Kitten on Beliefnet.com/goodnews. I think Gracie is courageous, adorable, inspiring and fantastic! And this article speaks the truth loud and clear! This amazing disabled Kitten is making life work for her in a beautiful way!

Everything in the media emphasizes the strive for perfection. Do you have the perfect car? The perfect husband? The perfect body? Gracie the kitten, short for her full name “Amazing Grace,” is anything but perfect in the eyes of the world. She was born without front legs. But in her own mind, she IS perfect. She lives a perfect life and enjoys a perfect love with her owner. She’s learned to stand like a kangaroo and hop like a bunny, her perfect way to get around. The lesson from Gracie is that it’s up to us to define perfection. What a great lesson from a sweet little animal.

Go here to read more: http://blog.beliefnet.com/goodnews/2011/06/amazing-grace-the-two-legged-kitten.html#ixzz1VUR2gqYD

~ Finding Direction; People Who've Inspired Me....~

I'm still trying to figure out where I'm going and what I'm doing with this blog. I was thinking over the weekend that maybe it's kind of silly to limit this blog which is supposedly about me and life, to my disability and disability-related issues. Of course being disabled will be a big part of it, but it's not all my life is about. I was talking to a friend about this blog when this idea occurred to me. I've been ashamed, uncomfortable embarrassed...something about being disabled for too long. I want to change that. But I don't want it to seem as if that's all that I am either. Because I have difficulty getting around, deal with a lot of pain everyday and need oxygen, I need to stick close to home. But that doesn't mean I'm not busy or don't do anything. When I stopped working people asked me for a long time. "What do you do all day?" "Aren't you bored out of your mind?". Those questions made me feel bad. I'm not sure why. Maybe because they made it sound like I had chosen to stop working. Being so limited and at home so much has been difficult for me to deal with primarily because my job was so important to me and I loved it..


I've had MAS my entire life but until I retired from work on disability I was pretty active.I pushed myself, too much according to my doctor. I was also exhausted all the time. Sometimes I felt like my mind was fogged up, literally. I didn't know, at the time, that such fatigue was part of MAS. There are days when I feel down and depressed, restless. Some of this could be from the chronic pain and the MAS. It's a bit of a vicious circle, though. Feeling this way then makes me feel selfish and ashamed, too. There are people across the world living much more difficult lives than I do. They struggle everyday with a smile and do what they have to do. Sometimes I find it hard, though, to focus, to keep in mind the lives of people I don't personally know or haven't met. But I often think about other people I met, mostly children since I was a child, in the hospital when I was having surgery years ago. While growing up, I usually had one or two surgeries a year. In those days, I stayed in the hospital for 2 - 4 weeks after the surgery, recuperating, before my doctor would discharge me. He worked out of Columbia-Presbyterian Hospital, a huge teaching hospital on the Upper West Side of NYC near Harlem. Patients of all races and nationalities, from one end of the financial spectrum to the other were treated at Columbia-Presbyterian Some of the kids I met back then were very different than me and some of them I'll never forget..


The first roommate I can remember pretty well was a 12-year old African-American girl, Lydia. Her mother was a sweet, soft-spoken women, a single mom with several children younger than Lydia at home. She worked full-time long hours or 2 jobs, I'm not sure which, so she wasn't able to visit Lydia very often. My mom treated Lydia like her own child when her mom couldn't be there. Whatever food or treats mom brought me when she arrived everyday at 1p.m., she brought for Lydia, too, My dad did the same. Lydia loved the nights my dad visited because he brought each of us bags of penny candy, every kind imaginable! The nurses yelled at my dad (mostly in a joking/teasing way) because as far as they were concerned, the last thing Lydia needed was a sugar high! Lydia had some kind of hip dysplasia. She'd had several surgeries with more to come. But that didn't keep her down. In fact that was the nurses problem - they couldn't get Lydia to stay in bed! Every time they turned their back, she was up and hopping down the hall!


Lydia would hop down the hall as fast as she possibly could and disappear! If she passed an open elevator, she'd hop on it, an open door, she go through it... The nurses couldn't keep up with her! She investigated rooms, corridors, rode the elevator...she introduced herself to patients, visitors, doctors, nurses, x-ray techs, orderlies, flower and mail delivery people, everybody! She was always telling jokes, she loved to tell jokes! She would eventually turn up laughing sheepishly or the nurses would find her or they'd get a call from another floor saying they had Lydia and she was telling jokes to everyone! The nurses would make her come back in a wheelchair if they had to go get her...Lydia hated the wheelchair and would bolt the minute she had the chance! The nurses tried to get mad and scold her but Lydia was so cute, charming and funny and she would make them laugh with some antics or stories or more of her jokes. Sometimes, if the nurses were too busy to pay attention to Lydia or Lydia had been going crazy and hopping around all day, they would tell her they were going to have to put her in restraints. Lydia was smart, she would get back in bed, then...and wait because she knew another shift was coming on in a little while! Lydia always came to tell me about her adventures!


Lydia had some bad days, though, where she was sad and down. It usually happened when she woke with bad pain in her leg, maybe the physical therapy wouldn't go well that day, then the feelings she had about missing her brothers and sisters, worrying about how they were managing, concern about her mother would overwhelm her. As the oldest of 5 kids, Lydia was responsible for them when her mom was at work. Her mom worked long hours so Lydia had to step in and be a mini-parent before school and after, as well. What was so remarkable about Lydia is she was happy despite how difficult her life was. Most often, when Lydia had a bad day in the hospital, by afternoon glimpses of the happy Lydia would show and by dinner she was up to her usual craziness!


There were other problems in Lydia's home life that my mother didn't want me to know about because she felt I was too young....I was just 10. And today I don't know all the details, I just know what I heard but didn't understand all those years ago. A social worker in the hospital spoke to my mom about Lydia since my mother was spending a lot of time with her. Lydia's father abandoned the family under bad circumstances (abuse and drugs of some sort, the police were involved) and left the family with nothing. Apparently this was very hard on Lydia and she sometimes acted out as a result, which seems understandable to me. But she always took care of her siblings and watched out for them.


I was only 10-years old when I met Lydia and spent more than a week with her as roommates in the hospital. Although I didn't know her entire story/history, what I did know deeply affected me and was the first time I understood that not all kids grew up as fortunate as I did. That life was tough and sometimes very unpleasant for some children and their families.


My life and Lydia's life were completely and totally different. My mother was a stay-at-home mom, my dad commuted into the city everyday for his job, my parents joined the country club across the street, ostensibly for me to use the pool which I did, but, of course, my family used all of the other amenities available there - tennis, golf, racquet ball etc, we took yearly vacation to Nantucket. I invited Lydia to come over and to stay with us not understanding how difficult that might be for Lydia.


I think about her often now and wonder how she is, what happened to her and her family. I hope good things happened for Lydia and her family. I think there are many children who grow up in circumstances similar to Lydia and her siblings. I wish that wasn't so but it certainly gives me a different perspective on my life and a reason to appreciate what I have and to do better. It's also why I hope I can be a source of support and help to other disabled people, young old, somewhere in between and their families!


I have stories of other people I met during my hospital stays and I will be sharing them here in future posts...

~ McCune-Albright Syndrome and Fibrous Dysplasia ~

I was looking over my posts so far on this blog and I realized if this is a blog about me and about my disability and being disabled, I should probably at least mention my disability!


I was born with McCune-Albright Syndrome (MAS) which is a rare disease that affects the bones, the endocrine system and the color (pigmentation) of the skin. It's also possible that various other systems in the body are affected as well. There hasn't been all that much research into this disease so it's difficult to determine all the areas of the body it might impact. MAS is a genetic but not inherited disease, which is unusual, and it's caused by mutations (new change) in the GNAS1 gene - the mutation to the DNA that occurs in the womb while the baby is developing.
The abnormal gene is present in a fraction, but not all, of the cells according to the available info. I have this abnormal gene present in many of my cells so that if you were to look at a bone scan of me, head to toe, many of my bones would look similar to swiss cheese ~ it looks as if most of my bones have actual holes which is the areas where there isn't solid bone. This is a very simplistic idea but it gives you a basic understanding of the disease.
MAS is a little confusing at first. It's called a syndrome, not a disease, meaning a variety of symptoms & conditions fall under its heading


The bone aspect of MAS is related to Fibrous Dysplasia (FD) a bone disease that destroys and replaces normal bone with fibrous bone tissue. One or more bones can be affected - in MAS more than one bone is affected.


The symptoms of Fibrous Dysplasia include:
:Bone pain
:Bone sores (lesions)
:Difficulty walking
:Endocrine gland problems
:Fractures or bone deformities (rare)
:Unusual skin color (pigmentation)


There's no cure for FD, doctors simply treat bone fractures and deformities as appropriate.


MAS includes FD and Symptoms & Signs:
(See Medline Plus)


Symptoms
:The hallmark symptom of McCune-Albright syndrome is premature puberty in girls. Menstrual periods may begin in early childhood, long before the breasts or pubic hair develop (which normally occur first). Puberty and menstrual bleeding may begin as early as 4 - 6 months in girls ~ it actually can begin earlier
:Early sexual development may also occur in boys, but it is not as common as it is in girls.
:Other symptoms include:
:Bone fractures
:Deformities of the bones in the face
:Gigantism
:Irregular, large patchy café-au-lait spots, especially on the back


Signs and tests - why I think other symptoms in the body are impacted by MAS
A physical examination may show signs of:
:Abnormal bone growth in the skull
:Abnormal heart rhythms
:Acromegaly
:Adrenal abnormalities
:Gigantism
:Hyperparathyroidism ~ the bones turn soft & become deformed, basically MAS!
:Hyperthyroidism
:Hypophosphatemia
:Large café-au-lait spots on the skin
:Liver disease, jaundice, fatty liver
:Ovarian cysts
:Pituitary or thyroid tumors
:Scar-like tissue in the bone (fibrous dysplasia)


There's no specific treatment for MAS. My bones, particularly the bones in my legs broke while I was growing up or bowed on their way to breaking and so I had many surgeries between the ages of 4 and 16 including scoliosis surgery. The surgeries stopped for a little while and then in my late 20s and early 30s I need some surgeries. I have had approximately 35 surgeries.




I developed asthma when I was 8. My doctors think it has dissipated quite a bit but, because my bones are weak and I have scoliosis, the cavity in which my lungs sit is compromised. I have what they call Restrictive Lung Disease so I still have breathing problems. In 2003 I was diagnosed with Pulmonary Hypertension. The doctors don't think it's primary or secondary pulmonary hypertension but a hybrid possibly due to my other health problems and the medications I take. Around 1998 I began experiencing chronic daily pain in my limbs and ribs. Today there are few places in my body, bone areas, that I don't have pain. I experience pain regularly in some areas and in others I get flare-ups on a daily basis. So everyday is a surprise, pain-wise!


The website I referenced above also includes a "Complications" category under which it lists:
:Blindness
:Cosmetic problems from bone abnormalities
:Deafness
:Osteitis fibrosa cystica
:Premature puberty
:Repeated broken bones
:Tumors of the bone (rare) ~ I'm not sure why it lists tumors of the bone as rare because if you have MAS tumors aren't rare ~ these tumors are not the same as those associated with cancer.


The Fibrous Dysplasia Foundation, Inc. is a terrific website that gives a great explanation of MAS and FD and provides articles, resources, advocacy info and more.

Write if and when you find work...!

Senator Tom Harkin is a longtime champion of people with disabilities I read on his website. There's a lot of information about disability rights, improving the employment situation for disabled people and equal opportunity and self-sufficiency for people with disabilities on Harkin's website. We'll see if anything comes from it. Please don't misunderstand me, I'm glad he supports disabled people and wants to see the situation in all areas improve for people with disabilities. It just seems like this has been talked about for several years but there isn't a lot of change. And with the financial situation in this country going down the tubes...well, that's not going to help! Three years ago, I went to a group meeting for disabled women at The Hospital for Joint Diseases in Manhattan. It was an opportunity for disabled women to get together and talk. At that time, I was still able to get around on crutches. There were 4 other women there and they were all in wheelchairs and all about 5 -19 years older than me. All of those women were concerned about getting jobs and wanted to talk about employment. I couldn't totally relate to them because, at that time, I wasn't working or looking to work. But now I can totally relate to them and I feel badly about not being able to help them then or really understand their worries. Now I can understand them and I share the same concerns. I need to find some work now and I'm discovering that it's not that easy. It's been 9 years since I worked. I may be smart and personable but I'm in a wheelchair and wear oxygen...why wouldn't an employer want to hire an able-bodied woman instead of me?


It’s difficult to stay focused some days. I feel useless, embarrassed and ashamed sometimes. I especially feel this way when I call places about working and, despite the info on their website, the computer, they act like I'm nuts and tell me they aren't hiring. Yesterday I found a website that supposedly lists jobs with employers willing to hire disabled people. I went looking for listings in my area. There were quite a few for Starbucks. I thought about working there but couldn't picture myself trying to maneuver my wheelchair behind the counter, especially in a really busy Starbucks. I had visions of coffee and foam everywhere including all over me! So I pulled up the job requirements, a very long list. The first one said "Lots of standing, walking and moving about in small area". So much for that job. But in the rest of that long list were requirements that knocked out just about every disabled person. It seemed to be a case of saying you're willing to hire the disabled but then making the job unfriendly to them. Nice.


It's the same with social services. I call them periodically n the off chance I might get a better, more helpful answer one day. Usually, though, the person on the other end of the phone tells me I get a lot of money and sounds bored or annoyed talking to me. When I ask them how I’m supposed to pay my rent and support my self on $1,000 a month they just say “I don’t know”. I haven't found much in the way of resources for people in situations like mine. I wonder what other disabled individuals do. I see many websites that promote the independence of the disabled or "talk" about the independence of the disabled but there doesn't seem to be a lot of actual, tangible assistance to make independence a reality for people like me. I am not finished looking for assistance, making phone calls, writing letters etc. but so far it seems that to have adequate shelter, food, clothing etc. I have to be dependant on family which I don't have or married or independently wealthy?!! It's frustrating and humiliating. And, actually I have finished making I'll of the phone calls and sending all of the emails I can think of but once I finish, I start up again!


Any suggestions, ideas, stories?!