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Our journey with Epidermolysis Bullosa

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On July 15, 2011, my life changed forever. It was the day we heard the words Epidermolysis Bullosa (EB). Initially, I was ecstatic, because we finally knew what was wrong with my baby girl. She had lost fingernails and toenails; she had fungus growing from her ear and beneath her toe nails. She had a very painful growth on the upper part of her ear that was surgically removed. Apparently, the growth began with a tear in her skin and dried blood trapped had begun to calcify, underneath the newly healed skin. At the slightest touch, she screamed. It continued to get larger and larger, and it grew more painful. Her pediatrician was not sure where to send us or what to do. He treated the fungus, but not the growth. By the second month of sleepless and painful nights, I could not accept no. We finally received a referral to see an ENT. He was extremely knowledgeable. He diagnosed her in 15 minutes, and had the growth removed by 8 am the next morning. This was a day before she was 4 months old.

She was 6 1/2 months old when we received the diagnosis of EB. However, the more I began to learn about it, I did not like it at all. I googled EB, and the pictures on the website was just cruel and unkind. I grew more fearful of how our lives were going to change. I was afraid of the suffering that would come with this disease. The children on the website had large parts of their body missing skin. These children were bandaged from neck to toe. They fingers had fused together. I looked at my ‘perfect’ daughter, and I just could not believe that she could go from where she was to such severity. It did not seem right, and somehow cruel.

Meeting with our first dermatologist did not do anything to help ease my fears. I was crying and upset. I was not upset because of what my daughter was going through, because she was fine, especially after her surgical procedure. She was almost seven months, and we had only seen one blister, and we had not experienced skin separation. We had grown accustomed to an occasional toenail or fingernail coming off. It didn’t bother her. She had become more curious, and began picking at her nails. The warmer it got, her skin on her toes would shed very easily, but this was nothing in comparison to what the internet showed. This I could handle, but I wanted to know if this could get worse. The dermatologist felt that I needed to become stronger, because as my daughter began to crawl and walk, her skin would just separate and slide off, from her feet, legs, and thighs.

The panic sets in, and the waiting game starts. Shortly, after our conversation with the dermatologist, we experienced our first really bad episode. Her fingers on her left hand, at the creases, front and back, simply just opened up. They were swollen and just burst open. I did a minor bleach hand soak to catch any early onset of infection, then applied the required medications, wrapped her hands, and we settled in. She was still my happy little girl.

Here we are a year later, and the story, I have described above seems like I am describing someone else’s child. We have not lost a toe or fingernail. We have not had any skin peelings or blisters or tears. She is fine. We went to see the EB specialists in Chapel Hill, and they feel that we may have seen the worst of it. There is a EB type that can ‘go away’ after a year. It’s unbelievable, and for me a miracle. We are walking, have almost conquered running, and climbing like any normal 18 month old. She is doing so well that she has begun swim classes!

Because, I threw myself into the EB community, I have met some amazing mothers and fathers that are continuing the fight. One day they will experience the miracle of change and transformation. There are so many people who do not know about EB, and we would love for this to change. We want more fantastic doctors, such as the ones in Chapel Hill. We want to shorten the time it takes to receive a diagnosis. We had to do three biopsies, and they all came back inconclusive. We need help ensuring that bandages are available, medications are available, and easier access to mental help providers to help guide parents and the children, as they get older, through the emotional and mental toll EB places on a family. There is ground breaking work that has been done, and we want that to continue. Our community is really small, and we need help lessen the suffering of our kids.

Although, EB appears to have ‘left’ our lives, we will always be connected, offering support, either near or far.

What can be done about obesity?

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We have First Lady Michelle Obama asking everyone to introduce activity to our children and into our daily lives. We have Mayor Michael Bloomberg forcing change by trying to control the ordering size of beverages. We have Jennifer Hudson singing will power into losing the weight. What are the consumers (the obese) doing to take part? If they are not willing to become a part of this issue, then it will not change. The incentives for losing the weight only benefits the obese.  It is their health care premium rates that will not drastically increase; they are not forced to vacate the airplane or pay for an extra seat. With their employers knowing that they do care and are actively involved in transforming their lives, job opportunities could also increase. It is a win-win for those that are obese to become actively involved in their lives.

Why is it so difficult for those that are obese to move out of their on way, which includes minimizing the ridicule, the doubt, and stereotypic behaviors?

Change is hard. There is so much uncertainty in change. The doubt and fear are crippling (Saltz 2007): What if I do not do well? What if I fail? What if I stop and cannot start again? Will the new look suit me? Can I handle the change, both physically and mentally? What if I gain, and not lose?

The war on obesity is not about food size or money, but that of a mental blockage, in my opinion. As Dr. Saltz (2007) stated, finding what triggered the weight gain is life changing. I cannot imagine a person wanting a pass over a job opportunity, mistreatment, or discriminated against because of their weight. Although, many of us may not do well avoiding misery, I am sure it is not sought after. That’s a part of life. We can wish life perfect; however, it comes with trials and tribulations. Some of our issues is weight; some have issues with drugs and alcohol.  The vast difference is those that are overweight/obese cannot hide what is so obvious, and are immediately placed at a disadvantage. It does not mean that all obese people are slow, stupid, uncaring, uneducated, or writhing with loneliness and unhappiness. Quite often, we are seen, before we are heard, therefore escaping the stereotypes become very difficult.

The insurance premiums will continue to rise; the airlines will continue to increase rates. It will be the same story as the smokers. Anyone that is obese should expect this to happen. Right and wrong is not my argument. In sake of competition, businesses are going to stay competitive, and this is another way to increase revenue. What we must understand is that it is not anyone’s responsibility to correct this problem, but that of the obese. Yes, we can face the issue of whether it is morally or ethically wrong for organizations to make profit for what some consider as a mental disorder, but can we really blame them?

Understanding that creating revenue is a chain reaction, when more than one type of organization can find profit, in a problem area. The insurance companies can decrease reimbursement rates on physicians, because they are seeing the patient often. The self-funded employer groups can ask that certain diabetic supplies and high blood pressure medicines be excluded from the formulary or durable medical equipment policy. The airlines can increase rates for their plus size customers. Head hunters can assume that their percentage will decrease, because there is a perceived notion that someone overweight is not appealing or physically suited for a job.

The increasing health care cost of America’s most visible consumers are that of the obese. The obese are not the only cost drivers, but this is a campaign issue, due to health care reform. Obesity has an estimated annual price tag, nationally, of $190 billion (Begley 2012). This sticker price guarantees this issue is not leaving anytime soon.

So what can be done about obesity? We, you, them cannot do anything, only I can affect change. If this is in fact a mental disorder, then this has to be acknowledged and handled appropriately, by the obese person. If it is a choice to become overweight, then accepting all that comes with it, has to become a part of daily living.

References:

Saltz, Gail (2007). Conquer your fears about losing excess weight. MSNBC. Retrieved from http://today.msnbc.msn.com/id/19488269/ns/today-relationships/t/conquer-your-fears-about-losing-excess-weight/

Begley, Sharon (2012). The Cost of Obesity. The HuffingtonPost.com. Retrieved from http://www.huffingtonpost.com/2012/04/30/obesity-costs-dollars-cents_n_1463763.html

Impeded by FAT

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I have been fat all of my adult life. I always justified it, because I had not experienced any health care scares, and I was fairly active. I hiked, camped, kayak, and loved the water. I didn’t have any issues putting a bathing suit on, and proudly displaying what ‘my momma gave me’. I felt that life was pretty gosh darn good. I went dancing almost every weekend. I didn’t smoke, abused alcohol, or any type of drugs. I just wanted to dance and dance. I think I am pretty good on the dance floor too. I just needed my bottle of water, and some rocking music. I have a thing for old 70s and 80s music. I could really ‘get down’ to that stuff!

What changed for me?

My husband and I had an unexpected pregnancy; our first. Needless to say, we were ecstatic, but I experienced my first scare about my size. Clinically, I was obese, regardless of my height; I am almost 6 feet tall. I knew that I wanted to lose weight before our first pregnancy, mainly because of the weight I thought I would gain, gestational diabetes scare, and high blood pressure, which could cause a very difficult pregnancy, and I did not want to expose my unborn child to any of that. What could I do now? Nothing.

I threw myself into a healthy lifestyle immediately. I drank ungodly amounts of water, fruits, and vegetables. It was an easy transition. I did not experience the horrible issues of morning sickness. The only thing that made me gag was gargling, after I brushed my teeth.  Around my fourth month, I began to lose weight, DURING my pregnancy. I began to shrink, and my belly began getting larger and larger. Now, I have another fear. What pregnant woman loses weight during her pregnancy? Something was wrong, I thought. I was so scared. My OBGYN kep

t assuring me that everything was just fine, and that my pregnancy was a diet for me. He found it amusing. Our baby was still measuring properly and was at a healthy weight. Hmmmmph..

By the time, it was time for our daughter to arrive, I had lost about 15 lbs during my pregnancy. One week after she was born (8 lbs 15 ozs/22 inches long), I lost 35 extra lbs. I am letting you know that it is possible, strange, and I did not like it. It scared the bejesus out of me, even with a healthy baby girl. It just did not seem possible. I was also curious about how long this was going to last, because I knew that my mind had not changed about food, and it would all come back if I did not change.

Now the challenges had begun.

2 days old, on Christmas day.

Michael Bloomberg’s Obesity fight: Cure or attack?

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Lately, I have thought about the new challenges that are being fought against obesity. The moral and ethical parts can be argued by someone else; however, as a health care professional, I want to talk about the need or necessity in this matter. Starting with the idea of whether Michael Bloomberg, the mayor of New York City, is on to something by banning large soft drinks in restaurants and movie theaters (Baker 2012), with a few questions:

  1. Should Mr. Bloomberg force people on consumption?
  2. Can he do this, legally?
  3. Is this hard-line going to slow obesity?

I do not believe that anyone should become able to force such a change. Forcing a change is not going to truly address the issues of obesity. However, Mr. Bloomberg is trying to combat the issue of obesity, which has become a contributing factor in the rise of health care cost. We can all argue until we are all blue in the face that this is morally and ethically wrong, and it still is not going to change minds overnight.

Convincing a person that drinking water could help keep up their weight loss over the years, and greatly reduce the risk of many health care scares, should not become a forced argument. Which is why many doctors are arguing that obesity is a mental disorder (Caplan 2011). There are many contributing factors to obesity, and that is not going to change, until that person begin to take part.

Legally, Mr. Bloomberg cannot stop an individual from receiving a 16 oz soda and consuming refills, which are sometimes offered for free. Is he then going to force the restaurants to not serve free soda refills? For the sake of argument, let’s say that the restaurants do that, what is to keep the consumers from simply purchasing another soda? Raising the prices on cigarettes did decrease smokers, but after a while, it just leveled off and was essentially unchanged from 2004 to 2010 (CDC 2011). Will this be the same outcome with the attempts to slow the rate of obesity?

The power of fat is not going to slow, because of a law. It is not going to slow, because of public opinion. It is not going to slow, because of the lowered consumption of sodas. One cannot be willed to decrease their waste line, by either force or enticements. It has to come emotionally, mentally, spiritually, and physically from the inside out, and although Mr. Bloomberg has good intentions, it is not going to drastically decrease the rate of obesity.

References:

CDC (2011). Decrease in Smoking Prevalence — Minnesota, 1999–2010. Retrieved from  http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6005a2.htm

Caplan, Paula J. (2011). Should Obesity Be Called a Mental Illness?. Psychology Today. Retrieved from http://www.psychologytoday.com/blog/science-isnt-golden/201105/should-obesity-be-called-mental-illness

Baker, Sam (2012). Bloomberg’s hard line on soft drinks has industry shook up. The Hill. Retrieved from http://thehill.com/blogs/healthwatch/nutrition/230577-bloombergs-hard-line-on-soft-drinks-has-industry-shook-up

New things, hopes, and experiences

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Hi to whomever is reading this. I am starting a new phase in my life, within my career and education. I want to have an opinion that matters; one that will be appreciated and shared. I hope that I am not overreaching. I believe any person that wants to affect change, should take part in that change.

So, here I am. I am unsure how this will go, but I have seen several times that ‘you should never give up’, while googling how to gain and keep up a successful blog. Apparently, a successful blog isn’t that easy. 🙂

What I hope to do with my blog:

  1. Initiate change with ideas
  2. Participate and use my voice (words)
  3. Reflect my skills and knowledge on Public Policy (Health Care Reform)
  4. Track my hopes and dreams for Health Care Reform
  5. Provide comment/feedback on current policies, in the news
  6. Matter

Evette