Health Care

Day 6 of DHEMM

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Well, it’s been hard. Harder than expected. Cutting out white foods are not the problem, it’s those dang squats. I have never pushed my body this much, except when I broke my leg. I lost about 15 lbs just trying to get off my bed and use the bedroom. I broke all three bones that connects my foot to my lower leg, including my fibula. To repair it, a plate and eight screws added for stability. Two of the screws were drilled through my fibula into my tibia. I had started working with a trainer, about 6 months afterwards, which caused me to break one of the screws. Needless to say, I had to have a second surgery to remove the two long screws. There will always be a piece of the screw embedded in my tibia. The second surgery allowed me the ability to move and use my leg the way it is meant. The only problem I have now is that I can feel it, when I apply pressure on that leg, i.e. squats. It doesn’t hurt, but I am well aware of the metal presence.

What i do know is that I am not a workout girl. So, whether I had the injury or not, this would still be difficult. Trying to get your big body to do what it needs is not an easy task. I do know that I am starting to lose inches again. I don’t measure. I snap pictures, which I haven’t done in a while. I may do some today. I am also aware that my clothes are looser. I’ve increased my protein intake, to help continue build my muscles. I think the squats are going to really help me with my Color Vibe run coming up. So, I am absolutely committed to completing this challenge, although it is not perfect. I don’t think perfect is the intent anyways; it’s the effort.

I went to my endocrinologist on Friday to check my Vitamin D levels. My levels should have increased for sure. I’ll find out this week what my numbers are. I also went to see a dermatologist, for my itchy skin. I have assumed that I have a food allergy, but I think it’s my detergent. I changed up everything I use externally, such as soap, lotion, detergent, and moisturizers. The itching had gotten better immediately, after washing my clothes and bedding, which is why I am almost certain it’s my detergent. We shall continue to see.

Day 6 following DHEMM challenge was my best day, although I ate like a trash compactor (I had white everything). Not only did I take my daughter to a day trip to Carolina Beach, NC, where I soaked up as much Vitamin D possible, I came home and did all of my exercises:  55 squats, 30 crunches, and 15 sit ups. I had an exceptional Fitbit day as well. check out my numbers:

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As you all can see, I am still absolutely committed to changing my life. My process is slow. You are not going to come here and see me posting 5-10 lbs lose in a three-week period. This is truly me making an honest effort to change the way I think and live my newfound healthy life. If I gave perfect, then you should know I am lying. These are things I want to continue, for the rest of my life. I am not interested in temporary or fast fixes, which is how JJ Smith teaches anyways.

Epidermolysis Bullosa and this HEAT

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Oh my goodness, this weather is horrendous. Today, we have very high ozone levels in Charlotte. It is pretty severe. Last summer, we experienced our worst time, with my daughter’s health, which lead us to her diagnosis on 7/15/11. The palm of her hand had developed third degree blisters, within minutes, and we didn’t know why. She was screaming and crying, and in my mind, in horrible pain. By the time, we got her to the emergency room, we were immediately admitted, because (1) she appeared to have been purposely burned, and (2) this was our second admission for weird problems that were not normal or natural. Their first thought was to rule out child abuse, which is the worst thing ever to go through, even if mentioned as a protocol.

IS IT CANCER?

Because this was not our first time at this pass, I was ready to ask more questions, without sobbing uncontrollably. My worst fear was that my 6 month old had some form of weird cancer, and they were having a very hard time diagnosing her. I had begun mentally preparing myself for the absolute worst. This time, when the same inpatient pediatrician had come in, my baby was playing happily and was very content. Her behavior was normal. She was playing with the big ‘bubbles’ that had formed in the palm of her hand. I said to the doctor, we have been here so many times, we are seeing her pediatrician 2 and 3 times a week and that alone should let you know that my daughter is not being abused. My husband and I are bringing her to you, we are not hiding in the shadows. Therefore this time, I need for you to think like a doctor; I need for you to become nosy and inquisitive; become the researcher you were, when you decided to become a doctor. What can cause blisters that look like a third degree burn without pain? She is clearly not in any pain, at least now she is not. If it was a true burn, she would be hollowing now. I need for you to think. What can cause this, simultaneously, without an obvious reason?

She said she understood, and will make some calls. She was going to finally speak with a dermatologist, because whatever problems my daughter experienced related back to her skin. She came back, after speaking with a dermatologist and said that Gabriella may have EB, but the dermatologist needed to look at her himself. He came in later that night, and sure enough that’s what he felt was her diagnosis.

OH MY GOODNESS, IT’S THE HEAT

About two weeks later, on her other hand, her fingers had begun to swell, and then they just burst open, at the creases. The front and back creases on her little fingers were open. You could look down, and see her meat. We were being hit with a tsunami. It was so frightening. We did not know why she was suddenly getting so bad. This had never happened before. I didn’t find out until December 2011 that it was the heat that had wreaked havoc on our summer and my daughter’s skin.

After joining the support group, mid-August, my daughter had begun getting better. The fingers opening at the creases never happened again, nor the huge blisters. Her new finger and toe nails grew in properly, and had not fallen off again. Usually, they would grow back, and fall off. We had stopped seeing red spots on her fingers and toes, which was our signal that there was some irritation. The skin on her toes stopped shedding. July and August were the worst months, and then it was just over. It was like a bad dream, not our reality.

We went on to do three biopsies that came back inconclusive. The EB specialist in Chapel Hill, finally said to us that we may have seen the worst of it. He advised us that there is a type of EB that has a life span of only one year, and Gabriella my have just went through it, although the chances of that is as rare as the disease itself, but possible. He felt confident that we were probably not going to have any more problems, but still to check and protect her skin. If there were any more abnormalities to come and see him immediately. He also said that next summer will let us know if she has seen her worst. That’s when the dots connected that high heat (summertime) causes huge problems for EB children. It’s when they suffer the most. Wintertime is when the skin heals mostly, even in the worst cases; if there is a problem, they are not as severe as it would normally be in the summertime.

OUR PROTOCOL

We finally have a fantastic pediatrician, in Charlotte, that I am confident can handle any issues that may arise. Now, if she does not remind me, I go about life with my baby, without a thought of EB. However, she had to remind me last week, it’s getting hot. So, let’s make sure she has sunscreen, and bug spray that is deet free. However, do NOT take her out in the highest temperature, and if so, only if necessary. Make sure she has thin socks that will protect her from frictional rubs, in her water shoes or crocs. No, we do not wear any pair of shoes; we need breathable cloth shoes. or crocs,which are perfectly ideal. However, I found some cute water shoes that some EB children favors, at Target. I really like these, because she can run in them. She has also outgrown her bucket hat from last year, and I found a replacement at Wal-mart last week. With my small efforts to protect my baby, we are doing just fine. We are approaching our one year anniversary to this diagnosis, and it is hotter than it was last year, and I am thankful to say, so far so good.

There are other things that I still do as well. She only wears 100% cotton. I have found that other materials irritate her skin. She is moisturized from head to toe, after every bath. Every morning, regardless of the weather, I still check her hand and feet for any blistering or shedding or redness. I guess old habits are hard to break, huh? Nothing is certain, but God, so I pray, check, and keep moving. We are no longer held hostage to this disease.

Hey… DON’T STARE!

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My daughter is 18 months old, and quite naturally, she will stare at someone new. However, I always say to her, don’t stare, but you can say hi. And because she is this bubbly, happy little person, she does not have a problem, throwing her hand up, saying very loudly.. HEEEEYYYYY, and will start a babbling conversation with you. It’s okay to just say ‘uh huh’, ‘I know’, or ‘for real?’ No matter how much, I say ‘hello’, she has chosen HHHEEEEYYYY! Then as we push-off or leave, I tell her to say bye-bye, and again, very loudly she yells BYE -BYEEEE, with this very proud wave she has concocted.

This is my first time at the wheel of motherhood, but it seems rude to stare at someone, regardless of the reason. Within the Epidermolysis Bullosa (EB) community, many of the children have scarred skin badly or covered completely with bandages, except their faces. I have heard many complaints, within our community how it upsets them to no end, especially the children. Listen, we would rather you not stare, and if you are curious, ask. Remember these are still children, and the look you give is heartbreaking, although you don’t know it. They can’t help it. It’s a genetic disease that has no cure, and unfortunately it is real.

If you do not know what a severely affected child looks like, imagine someone who has 3rd degree burns, everywhere. These children have not been burned; their skin is extremely fragile, and it is easy to experience tears and/or blisters, which is extraordinarily painful. There are children who have fused fingers. It looks like their hands are missing. They are actually there, their skin has just fused together.

Do you see why EB is the worst disease you have never heard of?

www.debra.org

www.EBfriends.ning.org

http://altinkeserlove.blogspot.co.uk/

There are children, like my daughter, who has this diagnosis, yet show very little to no sign of this disease; it isn’t uncommon. We are fortunate, but we will never forget about the other families, who are still actively fighting everyday for a cure or better solutions than a screaming child during bandage changes, while preparing for a pool salt or diluted bleach bath. Weird? Well, constant infection is a serious threat. If one goes undetected, it could be deadly. So, please don’t stare. Speak, ask questions, be informed, and know that you have just given a mom and dad a validation for getting up every day, doing what they must. We just want our children smiling, happy, and as comfortable as possible.

Be informed!

Am I saving the world?

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I want to wake up every morning with a passion. I want to say that I love what I do, everyday. Someone said to me this weekend, at a friend’s ‘completed-defend-of-dissertation-moving-away-party’ that she loves how I want to “save the world.” I thought that was so funny, because I never thought that I gave that energy off. I am passionate, yes, but a miracle worker? No.

We were talking about specializing in a field that aren’t hiring much. In other words, you don’t want a uniqueness, where you are simply not needed. She has just completed her PhD, but found, before completion that she needed to change her direction so that she can become more marketable. I don’t think anyone wants to go to school as long as we have and find ourselves unemployed or underemployed. I guess with all of my passion, I have a level of naiveté. I do not want to fall through the cracks, and become obsolete. There’s nothing cute about that!

I will heed her advice, and begin contacting employers to find out what they are looking for, so that I can have a lovely and marketable portfolio.

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