In response to Ellen’s new sitcom “One Big Happy”

Ms. DeGeneres, @TheEllenShow

I have been a fan of yours for many years now. I have laughed at your jokes, cried during your TV show when you reunited people, and was amazed by the talented people whom you have picked to play music, sing, and dance on your daytime talk show. However, this last week, I saw something on a show that you produce that did not seem to match what I have seen and heard to be true about you and your beliefs. On “One Big Happy” there was a joke about the female lead taking folic acid because she didn’t what a stupid baby, like a stupid, stupid baby. I was shocked that this was something that was okay to joke about, because it is not okay. Actually to be perfectly honest, it went way over the line.

Folic acid is a vitamin/supplement that women who want to get pregnant or whom are pregnant are encouraged to take in hopes that it will prevent neural tube defects, primarily Spina Bifida (SB for short). SB is a birth defect that is developed within the first 28 days of conception, which honestly most women do not know at that time that they are pregnant. The FDA and the SBA have promoted folic acid in hopes to reduce the number of babies born with SB. SB is one of the most common birth defects and cannot be cured though however it can be managed with proper medical care, early diagnosis and continued medical intervention including but not limited to surgical intervention to extend the life of the individual and treat the individual’s medical conditions that are associated with the diagnosis of SB.

SB is not a death sentence, though severe cases, depending on the type of SB and the locations that it effects related to the spine and the nerves, could result in long-term continuous care. However, individuals with SB are not stupid!! Most individuals whom are diagnosed with SB function at average to above average intellectually. Telling jokes about folic acid when it has been used as a preventative supplement directly connected with SB is absolutely asinine. So many disabilities have been in the spot light, including but not limited to MS, CP, Autism, and even Downs Syndrome and has been a forepaw to joke about these medical diagnosis. However, it seems okay to the writers of this show and to you as a producer to joke about folic acid. This is very disturbing and upsetting to the SB community as a whole.

I am a 34 year old woman, mother, wife, daughter, sister, college graduate, and professional who just happens to have SB. I have excelled at everything that I have done and continue to do so, even when odds are stacked against me and sometimes have to adapt to make things easier for me to accomplish in a world that frowns upon or outcast individuals that are labeled disabled. I have always put my abilities before my disability as have many of my friends. I do not let SB define me, nor will I ever let it define me because I am so much more than a birth defect.

SB happens more than most, including the medical community, are willing to admit. We need more activist telling the facts about this birth defect rather than comedians who think it is a great way to joke about a condition that they seem to know absolutely nothing about and seem not to be willing to learn so they could help a community of individuals that deserve the same respect that others have obtained from their communities and the nation. Not only do we have to fight every day for respect and understanding, as we age we have to fight for adequate health care to continue into adulthood. This is something I myself have been fighting since my early twenties. Unfortunately, the best doctors who treat SB are pediatric doctors and release us at the age of 18 or if we are lucky at the age of 21. This leaves us adults without treatments we deserve and need desperately to continue living a happy fulfilled life with our family and friends.

I would have expected more from an individual, like yourself, whom advocates for many different causes. I would love to believe that your writers and you yourself, did not mean for this joke to have a negative effect on a community of individuals who did not choose to have SB but have learned to embrace it and excel at whatever they decided to do throughout their lifetime. We need advocates whom are willing to put SB in the limelight using factual data to help build more awareness throughout this nation and in the medical community. With all the negative comments and jokes that Hollywood has produced regarding SB, I think it is time for someone to take a stand and offer us an apology. I would encourage you, Ellen, someone who I see as a strong female role model for many, to take a stand for us. I also would suggest that maybe on your talk show, you could highlight those with SB whom have accomplished great things and possibly bring some of us on your show to speak with you and give you the facts about this birth defect that affects many individuals. I know of two other people who would be willing, along with myself, who would love to meet with you and SB. The three of us are trying very hard to change the SB community for the better by making it an easier world for the new generation of children that are being born with SB and making changes in the way the medical community views the diagnosis.

Social media has had some damaging effects on the SB community and it’s very sad to see that individuals in their 20’s who don’t believe independence is possible and continue to live in a world of negativity and depression. We have encountered this all too often and find that these young people are concentrating more on their disability rather than their ability to be great leaders and advocated in their communities and more importantly, in their lives, to better educate expected mothers and grow to be better more productive members of society. I do not want that kind of lifestyle affecting the younger generations. Some of us have worked so hard to push the boundaries of this stigma associated with SB.

I encourage you, Ellen, to really take this to heart and consider what I have asked of you. You know what is like hiding something for many years with the fear of repercussions from people around you, your fans, and possibly your career. However, we respect you even more for being who you truly are, which is, an amazing woman who overcomes any obstacle that you have encountered with determination and laughter. I truly wish you the best and please continue to dance for those of us who are not able to due to our disabilities!!!! Best wishes, always to you, your family, and your success!!!

With sincerity!!

Christina Pepper

Updates and learning time management

So I haven’t blogged in a while and I apologize profusely!!!! Time management is something we all could use more practice with especially when you are working a full time job, managing your household and your health plus numerous other projects!!! So here is the lowdown on what has happened these last few weeks!!

I “graduated” from my training class at work and now I am adjusting to my regular schedule which is over night. My body is wants to adjust but things that need to happen must be accomplished during the day when stores and doctor’s offices are opened. It is sad that there are a lot of people that work over night however the rest of the world refuses to acknowledge that schedule. Sometimes I wonder if we work too hard and too much just to keep up!

My pain has increased however I do believe this is a direct correlation to getting back into the working field and dealing with the adjustments. I refuse, however to give up especially when my family needs this extra income! I am sure at some point my body will adjust, like it has before, and the pain will level out to a much more tolerable level. I also feel guilty that my home is not kept how it should be however again this an adjustment that we will overcome!

No matter what ability or disability that you may have or not have, does not mean that you are incapable of following your dreams and doing what is necessary to provide for your family, whether it be financially, spiritually, emotionally, physically, and psychologically. Those things will always be necessary for the family unit to thrive and you are always an essential part of that unit.

Putting yourself on a detailed schedule can help you in many ways with time management however you have to be dedicated. It is a learning curve I know and one that I have always struggled with, however communication with yourself and your family is always the best way to develop your time management skills. I will be researching better ways to manage the time I spend and making it productive without giving up on the things that mean the most to my family and myself!

I love blogging and it is a release for me to vent my frustrations and achievements. Plus it is a way for others who may be in the same situation or one like mine to know there are other people out there fighting the same battles and achieving success no matter what odds may be stacked against them!

I hope that all my readers will understand that I am dedicated to this blog and to informing the world about Spina Bifida, RSD/CRPS, pain management, and other issues as the blog continues to grow. However the learning curve may take me away from this from time to time but I refuse to give up on what I am passionate about, this blog being one.

Know that like everyone else, I am and will continue to be, a work in progress. I will continue to grow as an individual, a wife, a mother, a sister, a daughter, a friend, and a blogger amongst other things that define me! I hope that you all understand and know that I feel I have been called to this mission of informing the world that no matter what your odds may be that you are always needed and are important to others!!! I will not stop till I know that I have made a difference in this world no matter how big or small it may be!!!

That being said……shuffle on my friends!!!!!

In Honor of St. Paddy’s Day!!!!!!!!

So in honor of my beloved holiday, St. Patrick’s Day (St. Paddy’s Day) I have complied some interesting information for y’all!!!!

This song gets to me every time I hear it!!!

St. Patrick’s Day History

St Patrick is known as the patron saint of Ireland. True, he was not a born Irish. But he has become an integral part of the Irish heritage, mostly through his service across Ireland of the 5th century. Patrick was born in the later half of the 4th century AD. There are differing views about the exact year and place of his birth. According to one school of opinion, he was born about 390 A.D., while the other school says it is about 373 AD. Again, his birth place is said to be in either Scotland or Roman England. His real name was probably Maewyn Succat. Though Patricius was his Romanicized name, he was later came to be familiar as Patrick. Patrick was the son of Calpurnius, a Roman-British army officer. He was growing up as naturally as other kids in Britain. However, one day a band of pirates landed in south Wales and kidnapped this boy along with many others. Then they sold him into slavery in Ireland. He was there for 6 years, mostly imprisoned. This was when changes came to him. He dreamed of having seen God. Legend says, he was then dictated by God to escape with a getaway ship.

Finally, he did escape and went to Britain. And then to France. There he joined a monastery and studied under St. Germain, the bishop of Auxerre. He spent around 12 years in training. And when he became a bishop he dreamed that the Irish were calling him back to Ireland to tell them about God. The Confessio, Patrick’s spiritual autobiography, is the most important document regarding this. It tells of a dream after his return to Britain, in which one Victoricus delivered him a letter headed “The Voice of the Irish.” So he set out for Ireland with the Pope’s blessings. There he converted the Gaelic Irish, who were then mostly Pagans, to Christianity. He was confident in the Lord, he journeyed far and wide, baptizing and confirming with untiring zeal. And, in a diplomatic fashion he brought gifts to a kinglet here and a lawgiver there, but accepted none from any.

Indeed, Patrick was quite successful at winning converts. Through active preaching, he made important converts even among the royal families. And this fact upset the Celtic Druids. Patrick was arrested several times, but escaped each time. For 20 years he had traveled throughout Ireland, establishing monasteries across the country. He also set up schools and churches which would aid him in his conversion. He developed a native clergy, fostered the growth of monasticism, established dioceses, and held church councils. Patrick’s doctrine is considered orthodox and has been interpreted as anti-Pelagian. Although he is not particularly noted as a man of learning, a few of his writings remain extant: his Confession, a reply to his detractors, and several letters. The Lorica (“Breastplate”), a famous hymn attributed to Patrick, may date to a later period. By the end of the 7th century Patrick had become a legendary figure, and the legends have continued to grow since then.

There are many legends associated with St Patrick. It is said that he used the three-leafed shamrock to explain the concept of the Trinity; which refers to the combination of Father, Son, and the Holy Spirit. Hence its strong association with his day and name Legend also has that, Saint Patrick had put the curse of God on venomous snakes in Ireland. And he drove all the snakes into the sea where they drowned. True, these are mostly legends. But, after some 1500 years, these legends have been inseparably combined with the facts. And together they have helped us know much about the Saint and the spirit behind celebration of the day.

Patrick’s mission in Ireland lasted for over 20 years. He died on March 17, AD 461. That day has been commemorated as St. Patrick’s Day ever since. The day’s spirit is to celebrate the universal baptization of Ireland. Though originally a Catholic holy day, St. Patrick’s Day has evolved into more of a secular holiday. Or, rather, ‘be an Irish Day ‘. And the Irish has borne it as part of their national tradition in everywhere they populated and prospered.

The Catholic feast day for this most loved of Irish saints has become a holiday in celebration of the Irish and Irish culture. The leprechaun, a Celtic fairy, has become entrenched as a chief symbol for this holiday, as is the shamrock, an ancient symbol for the triple goddess Brigit. It is fitting that this holiday should fall at the time of the year when the return of spring begins to seem at hand. But why the icons like the green color, the tri-leafed shamrock, the leprechaun, or the pot of gold and Blarney’s stone- all came to be associated with the celebration of this Day? And what do they all mean? Click Here to learn Read more at http://www.theholidayspot.com/patrick/historyofpatrick.htm#SXP608lxgSWwci4d.99

St. Patrick’s Day Facts & Trivia

In Ireland, St. Patrick’s Day is a religious holiday similar to Christmas and Easter.

Erin go Bragh translates to “Ireland forever.”

The very first St. Patrick’s Day parade was not in Ireland. It was in Boston in 1737.

Do you ever drink a black and tan??? Did you know that the Irish called the English “black and tans” because of their uniforms when they were brought in to Ireland from London?????

The largest parade in the United States, held since 1762, is in New York City, and draws more than one million spectators each year.

Over 100 US cities hold a parade every year. Some of the other biggest St. Patrick’s Day parades are in Chicago, Illinois and Savannah, Georgia.

The city of Chicago goes so far to celebrate that they dye their river green.

Green is associated with Saint Patrick’s Day because it is the color of spring, of Ireland, and of the shamrock.

To celebrate St. Patrick’s Day, 110 million people will celebrate the day by wearing green, making an Irish-inspired meal, or going out to celebrate.

There are 33.7 million U.S. residents who are of Irish ancestry. That number is almost nine times the population of Ireland itself.

15 million cards are exchanged on St. Patrick’s Day. 10 percent of all St Patrick’s Day cards are sold in New York.

19 Presidents of the United States proudly claim Irish heritage — including our first President, George Washington.

St. Patrick is a hero in Ireland. And there are about 60 churches and cathedrals named for him in Ireland alone. One of the most famous cathedrals is St. Patrick’s Cathedral in Dublin. These grounds bear the mark of the place where St. Patrick baptized his converts.

St. Patrick’s Day Celebration

• Corned beef and cabbage is a traditional St. Patrick’s Day dish. In 2009, roughly 26.1 billion pounds of beef and 2.3 billion pounds of cabbage were produced in the United States. Note that in Ireland they do not celebrate with corned beef like we do in the U.S. however they make bacon and cabbage!!!!
• Irish soda bread gets its name and distinctive character from the use of baking soda rather than yeast as a leavening agent. It is a bread I would kill to have sent over every day from the Emerald Isle!!!!
• Lime green chrysanthemums are often requested for St. Patrick’s Day parades and celebrations. However, I prefer the shamrocks to anything else!!

St. Patrick’s Day Parade

• The first St. Patrick’s Day parade took place in the United States on March 17, 1762, when Irish soldiers serving in the English military marched through New York City.
• More than 100 St. Patrick’s Day parades are held across the United States. New York City and Boston are home to the largest celebrations.
• At the annual New York City St. Patrick’s Day parade, participants march up 5th Avenue from 44th Street to 86th Street. Each year, between 150,000 and 250,000 marchers take part in the parade, which does not allow automobiles or floats.

And I will end this with some amazing Irish drinking/pub songs! So grab a pint or some whiskey and have fun!!!!

And some from my friend, Rich McDuff at McGuire’s Irish Pub in Pensacola, FL!!!!

So shuffle on my friends and stay safe this St. Paddy’s Day!!!!