I haven’t written for this blog in a long time. So many things have been happening in my personal life that has made it difficult to write every day. However, today there are many things I would like to address.
Though many things are related to Spina Bifida, not EVERYTHING is! Kids fall, scrape their hands, legs, knees, feet, etc. but that does not mean that you need to wrap your child up in bubble wrap before they go out to play. Whether your child has a disability or is able bodied, it will happen. As a parent myself, I want to protect my child as much as possible, however I know things will happen. No matter what you do, nothing can prevent accidents. You just have to pick your child up and have them try it again. They will learn how to adapt, improvise and overcome any obstacle that they may face. Sometimes, parents can be the ones to hold their children back, even though it may be because of good heart-felt intentions. Do not concentrate on their disability concentrate on their ABILITIES!!! If your child is active and mobile, you should encourage that by strengthening their muscles, including legs, core and arms. This will benefit your child throughout their lifetime.
Not everyone with SB has a learning disability, even AB people have them. Please do not tie everything up in a little bow and blame it all on SB. If you do not encourage your child to push past their disability and overcome obstacles, how are you preparing them for the real world and what obstacles they will face as adults? Learning disabilities can be overcome by teaching alternate ways of thinking and looking outside the box.
Independence is the key to successful people, whether they have a disability or not. Holding a child, teen or an adult back from being independent, whether partially or fully, is not helping your child succeed. It is inhibiting them and giving them a crutch to lean on for the rest of their lives so they can continue to say “I can’t” without even attempting to try. Even an “I tried” is better than an “I can’t”!
Public forums, social media, and other venues are a great way to communicate with others that have disabilities. However, it can be a detriment too. While they are great to see that other people are going through similar issues, remember the information that people give you in your situation is not gospel. Unless they are a professional in the field of medicine, education, psychology, etc., understand that it is their opinion. We all know what they say about opinions!!! Also, a lot of the information is incorrect or not up to date. Especially when it comes to SB. Even medical professionals have a hard time with the relaying correct information to their patients. So second and third opinions from medical professionals are very important. I personally cannot tell you how many doctors I have fired due to this exact issue.
Last, but definitely the most important, no matter what you are going through, there is a light at the end somewhere. We may not see the bigger picture at the time, however there is one. Learn from your struggles and disappointments. If we are not learning, we are not growing mentally, physically, psychologically, and spiritually. All of this impacts how you handle situations and relationships!!! Push through the hard times, because there will be easy times ahead!!!!
Understand I am saying all of this, not to criticize anyone, however to encourage you to be the best you can be! This is nothing I have never encountered myself, so it does come from a place I have been before and sometimes go back to, however I have learned to push through the hard times and fight. I will not back down, I will not tell you it is easy, I will not lie to you or sugar-coat anything. I am honest and raw.
I am looking to collect data on SB in the U.S. There is not much data on adults with SB and I am hoping this will help show the medical community that we exist and we deserve attention and medical care throughout our lifetime!!!!
Couple of things I have noticed recently on Facebook that is bugging the hell out of me and I would like to rant to get it off my chest!!!
I am a part of some “support groups” for specific medical conditions that I have, however people in these groups define support in a totally different way than I do and the way Webster defines it! So that being said, here is Webster’s definition of support:
(2): to uphold or defend as valid or right :advocate <supports fair play>
(3) : to argue or vote for <supported the motion to lower taxes>
b (1) :assist, help <bombers supported the ground troops>
(2) : to act with (a star actor)
(3) : to bid in bridge so as to show support for
c : to provide with substantiation :corroborate <support an alibi>
3: a : to pay the costs of :maintain <support a family>
b : to provide a basis for the existence or subsistence of <the island could probably support three — A. B. C. Whipple> <support a habit>
4: a : to hold up or serve as a foundation or prop for
b : to maintain (a price) at a desired level by purchases or loans; also : to maintain the price of by purchases or loans
5: to keep from fainting, yielding, or losing courage:comfort
6: to keep (something) going
And the definition of support group:
a group of people with common experiences and concerns who provide emotional and moral support for one another
Obviously telling them the facts, stating the truth, and NOT enabling them to concentrate ONLY on their disability is not support. According to certain people that is bullying, which I TOALLY 100% DISAGREE!!! Now how does Webster define bullying? Guess we need a definition! So here it is:
2: a : a blustering browbeating person; especially : one habitually cruel to others who are weaker b :pimp
3: a hired ruffian
Now that we have all of that defined, can someone please tell me how these people in some of these groups throw these terms around when they actually do not know the definition and I am assuming have never really looked them up!!!
In these groups you see a few of us tell it like it is. We don’t sugar coat things, we don’t enable people to continue to whine and cry all the time about how “hard” it is to have SB, and we don’t coddle them either. This is because the real world will not do those things for them and we never had those things done to us and we turned out very well adjusted; socially, educationally, mentally, etc. We want those same things for these young adults growing up today. We want them to succeed and become better people, not just for themselves, but for their communities. However, if you tell them to knock it off or tell them how to handle situations they may find themselves in, we get referred to as the bullies. Now we aren’t being mean intentionally, we really aren’t being mean or malicious at all, yet we are bullies because we do not enable this type of behavior. Yes having SB does suck sometimes, just like I am sure being “normal” sucks too. Yet, it is not the end of the world and you can be independent and take charge of your own life if you would stop dwelling on your disability and concentrate more on your abilities! How is this being cruel? It isn’t! I find this term “bully” being used way to often in situations where others are just grasping for straws. Leave this word, this term, to those situations where someone is truly a bully, where they don’t care about you and perceive you are weak. The only one whom determines if you are weak or not is yourself!
So to continue, you have the pictures in these feeds. Not to piss anyone off, honestly I don’t really care if anyone gets offended, but if you are posting pictures of your completely disgusting and so infected sores/wounds that you need to be at the wound care clinic and even then they’d probably admit you to the hospital, PLEASE put a warning on your initial post to proceed with caution. Then if you must post the picture, out of respect for others in the group, post the picture in the comments. Even then that makes me want to psychoanalyze you and your need to be posting the pictures in the first place!!! Is it for attention? Is it for sympathy? Are you trying to prove something? Why, just why????
Then comes the parents!!! Holy Mother of all that is good!!!! Now they do all that has been mentioned above and even more but they use their child! Their child who has yet to learn of social media, has no voice as to what is being said or shown of their selves, and who are totally innocent yet sometimes is used as a pawn to gain something from total strangers! Now I understand that having a child with a disability is hard, I do understand. However it is not only hard on the parent’s, it is hard on the siblings, the family as a unit and most importantly, it is hard on the child. That is just it though, nobody said parenting was easy! I just don’t understand how you can bitch about how inconvenient it is to take care of your child’s medical needs because it does not fit into YOUR schedule! Every parent has to change their child’s diaper and feed them – that is what parent’s do!!
Yet again, posting pictures! Why must you post pictures of your child’s sores or other things so that strangers can see how “hard” it is to take care of your child especially when you have a nurse in your home almost full-time! I don’t get this!! My mother took care of three kids, went to college full-time while my dad was working and gone pretty much the entire week, and STILL was able to look after my medical care along with my siblings and their childhood needs! She did all of that without the help of a nurse or extra set of hands. Thank goodness because she taught me how to be independent, how to handle my medical needs by myself, and how to understand that even though I may have a disability, I had more abilities!!!!
Why do must people do these things? I am glad I didn’t grow up with my face and all my scares thrown up on social media. I think if I had, I would have never been able to speak out about SB in the manner that I do now. I think I would have been even more self-conscious and probably would have withdrawn during my teenage years and possibly I would have never gone to college. I would probably have feared that someone would find those pictures of me on social media and use it against me like cruel kids do these days. I would have been mortified! I also probably would have not dated and I am stepping out on a ledge here but I don’t know if I would have even thought about getting married.
My question to y’all is this, what is your opinion on these topics? Have you ever experienced anything like what was mentioned above, good or bad? What do you think will help these young people growing up with disABILITIES? Leave a comment for me!!!!
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!!!
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!!!
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!!!!
This is a very healthy meal that you can make fast and cook the ribs while you are busy throughout the day. The cauliflower and green beans can be made about an hour before you are ready to eat/serve. The cauliflower takes the place of mashed potatoes and is healthier for you as it eliminates the starches that you would have with the potatoes.
Ingredients:
1 pack of Country Style Pork Ribs
1 head of Cauliflower
! package of frozen Green Beans
4 tablespoons of Kerrygold Irish butter with spices
Greek seasoning, salt, garlic powder
Directions:
Place Country Style Pork Ribs in slow cooker, on low for 6-9 hours. Season with Greek seasoning.
An hour before you are ready to eat – wash and cut up cauliflower.
Steam cauliflower until soft. Place the cauliflower in large mixing bowel or blender and mix/blend until a smooth consistency adding Kerrygold butter, salt and garlic powder to taste. You may also add Almond Milk or regular milk (which ever you prefer) to make it a little creamier.
Heat up frozen green beans in microwave or on the stove as directed.
Serve when desired!!!
I hope you love this as much as I do!!! Shuffle on my friends!!!
Chronic Pain: Introduction to building a Team of Doctors for PM and its Symptoms
Chronic pain is one of the most difficult medical diagnosis to treat because it comes with a list of its own side effects. So many times pain management doctors just want to treat the pain only without recognizing the side effects, such as depression, that exacerbate the pain. If the doctor does not look at the total overall effect chronic pain has on the individual, more than likely the patient will not receive the best medical care to treat CP and the side effects. Patients need to be honest with their PM doctors about their CP and all the symptoms they are having, regardless if you believe it is related or not to your CP diagnosis. Other symptoms you need to speak with your doctor about include sleeping problems, how you feel during flares and lower pain days, any mood problems, and (but not limited to) how you socialize with others.
There are so many ways to control your chronic pain, including medications, meditation, acupuncture, chiropractic treatments, biofeedback, psychology, psychiatry, IV therapy, and even surgical intervention. Pain Management doctors need to look at the whole patient and discuss every avenue of treatments available for and tailored to the patient.
Medications have come more advanced, more effective, and there are many different options available then there were even 30 years ago. The majority of pain management doctors are anesthesiologist who specialized in pain management. Their knowledge of pharmacology is vast, however every doctor has their particular go to medications that they like to use. Sometimes this is an advantage to the patient, because the doctor has seen many patients respond positively to the medication. However this can also be a huge disadvantage because every patient is different in many ways, including their pain diagnosis and location, medical history, family history, and how their pain effects them physically, psychologically, socially, and emotionally.
Working with a team of doctors that communicate by sharing information and treatment options can benefit the patient and their overall health. Many times medications such as those classified for neuropathic pain possibly can be more effective if combined with an antidepressant. This where a team of doctors can benefit the patient by having those doctors who’s pharmacology information is greater in a certain classification can work with the other team doctors to determine what combination will work best for the patient. Not only will this help treat the pain, it also can help to treat the side effects of chronic pain, such as depression and insomnia. Many side effects can increase pain if not treated correctly. So adding an antidepressant/antianxiety/sleep medications can help the patient relax, get relief, and a restful night’s sleep. This in return benefits the patient, their body, and overall health.
When interviewing a pain management doctor (or any doctor), remember a couple of things:
What is their educational background? EX: Where did they go to medical school? Where did they do their fellowship? What is their specialty?
What is their professional background? EX: What clinics/hospitals have they worked for? Do they have any complaints against them?
How do they interact with you? EX: Do they listen well? Do they have a good rapport? Do you feel comfortable with them?
Are they willing to work with other doctors? EX: Your GP, psychologist, psychiatrist, surgeon?
Do they look at your overall health? EX: Your medical and family history? Other symptoms such as insomnia or depression?
Are they too quick to write you a prescription? EX: “All my patients take (insert medication here) and it really works for them.” And hands you that script.
Are they willing to research alternative treatments if conventional ones do not work? EX: If nerve blocks stop working, would they look into IV therapies, ketamine treatments, or even clinical trials?
If they can’t help you in the future, will they write you a referral to someone whom can? EX: If everything that they have tried doesn’t work, will they help you search for someone that may be able to help? Or, are they willing to add another doctor (possibly in a different specialty) to the team by referring you to see them?
Remember, you control your appointments. You should be able to ask questions, voice concerns and be honest about your pain and side effects. Also, you chose to hire your doctors, if they do not have your best interest in mind, you can fire them! You want to choose a doctor that will work with you and a team of doctors to provide the best treatment plan for your chronic pain and the side effects!
As your children gets older, sometimes it is hard to find a doctor that is qualified, knowledgeable, and highly skilled in the area of Spina Bifida. This also happens throughout their life from infancy/toddler stage through adulthood. Sometimes, you may need to travel to a SB clinic, a children’s hospital that specializes in SB, or other specialist that deal with specific conditions related to SB – such as neurology, neurosurgery, urology, orthopedic, nephrology, gastroenterology, physical therapy (occupational, orthopedic, neurological, and, rehabilitation, pediatric), neuropsychology, psychology, ophthalmology, optometry, possible pain management, speech pathology and a pediatrician – just to name a few. Your child deserves the best care possible for their SB and you may need a team of doctors who are willing to share information and develop a care plan tailored to your child and their needs according to their level of SB. I have some advice on how to navigate through the medical community while being organized and prepared for whatever situation you may encounter.
1. Maintain your child’s medical history. Get copies of every major appointment, diagnosis, testing (including radiology reports, blood work, and any work up done by a specialist), surgical history, medications, allergies, and all diagnosis. Maintain an organized binder by classification with all these copies of medical records. Take this to every appointment, making sure you have extra notebook paper or spiral notebook in the binder, so you can take notes at all appointments. (Also see my post “Traveling with Medical Conditions” and “Simple Medical Worksheet” because they both address how my simple work sheet is written.)
2. For MRI’s, CT scans, and any diagnostic imaging, make sure you not only have a CD with the images on it (easy to take to appointments) and the radiology report (file in your binder) but also retain the films, especially when it comes to MRI’s. Have a place in your home to store them, ex: on the top shelf of a bedroom/linen closet. This way if neurology or neurosurgery wants to compare the images to the prior ones, they can do so. Most neurosurgeons are okay with just having the CD copy, however some of the old school doctors love seeing the actual films themselves. The reason being is they might spot something that the radiologist missed in their report. Also this is a great way to show you, as a parent, and your child (when they are old enough to understand) the difference in the imaging from the prior one.
3. Before each appointment, in the binder, write down any questions, concerns, comments, changes or medical testing and surgeries, which have happened since your last appointment with that particular doctor. This is the best way to prepare for the appointment and to remember everything that you needed to say or needed more clarification on a certain test, diagnosis, or even a recommendation they had made that you might not have understood completely. I prefer to have a section for each doctor and/or field of study.
4. While at each appointment, take notes so that you remember what the doctor had said and recommended at that appointment. Sometimes we get so overwhelmed with all the information during an appointment, that we are lucky to remember half of what they said/recommended. Speak up if you have a question or concern and ask them to clarify it for you. Sometimes the medical community loves to use all the medical jargon and don’t realize that most people might not understand what they are saying completely.
5. It is always good to get a second opinion, especially when it comes to surgical interventions. There is no repercussions on you or your child by getting a second opinion or even a third. Your intentions are to find the right doctor or procedure that you feel would be best for your child and their quality of life.
6. You also have the right to fire a doctor that you feel is not the best option for you, your child and their treatment. If you feel that they don’t have enough experience, they don’t communicate well with you or your child, or you question their recommendations, you can fire them. You and your child need a doctor who is willing to work with you, your child, and other doctors on your team, to find the best treatment available.
7. You do have the right to file a complaint against the doctor if you feel one is needed, especially if they have been unprofessional or unethical. You can file the complaint with the clinic or hospital they are affiliated with or you may speak to another doctor (that you are comfortable with) and they can explain the channels of filing the complaint. If you feel that the appropriate action was not taken in remedying the situation, you can also get in touch with the state medical society or licensing board. I have been in this situation. When I went through the clinic’s procedure of filing a complaint, the minute I said that I would go to the state board, they were immediately willing to help me. I do not know the outcome of the complaint I filed, however I did let them know that if I find out that another person complains about this particular doctor, I would then take it to the state board. You should not have to deal with unprofessional and unethical doctors.
8. Go with your gut feeling. This is like your warning light going off. If you feel something is just not right with a treatment, a doctor, or with your child; go with it and find the best way to handle the situation. Again, you have the right to fire a doctor so you can obtain the best care for your child. This also applies to emergency doctor appointments or trips to the ER. If you feel that your child is having abnormal symptoms or behavior, call the doctor or go to the ER. Parents know their children the best, so it is always safer to seek medical attention when you feel something just isn’t right!!! It is always better to be proactive than to let the symptoms escalate. This way you can get a solution/intervention as soon as possible!
9. Remember, you are your child’s best advocate. Fight hard for the best treatments out there for your child throughout their life. Stay on top of doctor’s appointments, medical testing, diagnosis, and treatments. If your child is in the hospital as an inpatient, you can always call and request a patient advocate to help you. Use any and all resources you can for the best interest of your child. Also, there might be help available in your state for a medical advocate.
****All that is bolded and underlined below, should be on your worksheet (bolded & underlined), so they are able to view and distinguish between the different fields. I would also single space it so you can fit more onto one page****
MEDICAL HISTORY
Name of Patient
Date of Birth
Insurance information
Parent’s Name
Parent’s Contact Information
ALLERGIES (this needs to be in red bolded font and highlighted)
DIAGNOSIS (list these individually, on separate lines)
Spina Bifida
Hydrocephalus
Neurogenic Bladder (must catheterize)
MEDICATIONS (list the name, dosage amount, and dosage schedule – you also can google how to abbreviate dosage schedule EX: prn, bid, tid)
2011 Release of Tethered Cord Vanderbilt Hospital, Nashville, TN
DOCTORS (the one’s you see on a regular schedule, what specialty, list their name, address, and telephone, you can do this in two columns and use abbreviation for their specialty)
Dr. Joe Smith – General Practitioner/Primary Care Physician (GP/PCP)
1234 Medical Park
City, State, Zip
(555) 555-5555
Dr. John Doe – Neurologist
4567 Medical Plaza Dr
City, State, Zip
(555) 555-5555
*********** You should make this as a Word document and save it, so you can update information. It is a good idea to make multiple copies. Keep one in your purse, in your car, in your child’s backpack, file one with the school, at home where you store emergency numbers and information, leave a copy out for the babysitter in case of an emergency, file a copy in the medical binder, take them to all doctor’s appointments (either give them the sheet or have them make a copy), and bring them to the ER or Urgent Care facilities if your child needs to see a doctor quickly. This helps you know all the information many doctor’s offices and ER’s need to know to help determine the best care for your child. Keeping it up to date will also help you keep track of everything.*************************
Hope this helps you my friends! Keep shuffling on!!!
Christina Shuffle 