Today I was honored to have my story shared as Day 102 on the I am Ballsy Facebook page! A big thank you to my friend Liz over at WomanlyWoman for being ballsy and introducing me to the very ballsy Thomas and his page.
I grew up in America, in the society that hates fat people and yet I’ve never hated myself. I’m not sure how I missed the memo that I am suppose to dislike my body and myself for that matter not just because I am fat, but I gather because I am female. It seems most women, no matter the size, skin color, hair color, or education level have been taught to hate at least one thing about themselves. To feel they are lesser than others, and for that matter then engage in this competition to be “better” than those who all feel the same way?
Yes, so am I.
I am more confused by how I was able to avoid this self hate, and perhaps if I knew I could help others avoid hating themselves. It’s enough having society hate me for being fat, and then hate me even MORE for speaking up for myself against the hate. How dare the fat chick talk back to us? Or how dare the fat chick be happy? That’s not right, fat people are suppose to be sad and depressed! Shame on her for accepting herself and enjoying her life, that kind of example will never convince people that they should not want to be fat!
I make no apologies for being who I am, and loving who I am. If you cannot handle my reality then look away, but do not try to convince me that I am in denial.
People hate me because they fear being fat. They fear that if they become fat then society will treat them the way I am treated, or worse how they treat fat people. I have found the same hate from people who were once fat and have lost weight, they fear regain, they fear feeling the way they once felt about themselves. Why is being fat such a bad thing?
As I say, “Fat describes me, it does not define me.” Fat described my physical appearance, I do not hide from the “f” word. Sugar coating it by saying “pleasantly plump”, “plus size”, “fluffy”, “juicy”, “heavy set”, “full figured”, really does nothing to change my reality. After all, a rose by any other name would still smell as sweet.
I do not hate being fat because I base my self worth on more than my appearance.
I have always been fat, I will always be fat. When I made the decision to have gastric bypass surgery the surgeons estimated goal weight for me based on losing 50-70% of my excess weight was 220lbs. At 5’3″ and 220lbs I would have still been morbidly obese and qualified for weight loss surgery. Four years after surgery, and after my panniculectomy I did reach my lowest adult weight of 250lbs. I had lost half my body weight from 502lbs.
Wow, half my size and my life was PERFECT. No, actually my life then was not as full filling and exciting as my life is today writing this at 406lbs (my scale could actually register my weight this morning instead of OVRLD).
When I hit my “rock bottom” moment in April 2000, I knew I had to make a plan to change my life. I was morbidly obese, unemployed, and had not completed my college degree. While my weight definitely affected my life, it was not the source of all my life problems. Yes, part of the reason I had not completed my degree was because it was often difficult to walk to class, there were also many times I walked to the building and spent the night talking to my best friend in the computer lab instead of going to class. My problems were not due to my weight; my weight and my life problems were due to me not taking care of myself.
My plan was to get my life together, address my health, which included my weight, to finish my education, and overall be employable. At that point in time it did not include having a boyfriend or dating. Honestly, getting my own life back on track was enough work without involving someone else in the process.
I might have mentioned this before but patience is not a strength of mine. So instead of setting small attainable goals to reach in a realistic time frame I decided to jump in head first. I applied for graduate school and was accepted, this then prompted me to quickly complete my Bachelor degree. I also decided the weight loss I was achieving on my own was not going to be enough, nor quick enough, so I researched and decided to have weight loss surgery. Looking back the decision to address my health and pursue my education at the same time was not wise. This was the peak time of my lymphedema treatment and in addition to the appointments to have manual lymph drainage and compression wrapping on legs I was also often hospitalized for cellutitis and required IV antibiotics. Nothing says dedication like pulling over to the side of the road to self administer IV medication via mediport. I had to take a quarter off classes, and in others I took “incomplete”. As I said, I took on too much for me and my learning style and personal discipline to manage. Honestly, managing to walk around a hilly campus with my legs wrapped was quite an accomplishment. I probably just needed more time, perhaps another year to complete my studies. But instead, impatience me jumped shipped after two years and got a job. I planned on finishing my “incompletes” via e-mail. The professors agreed to the arrangement. However, when shortly after starting my new job I had a whole new wave of medical issues hit, and my life took a huge turn which actually lead to my current career.
My new job involved relocating to Miami, Florida. Life was getting better, or so I thought. Four months after my move I was hospitalized for cellulitis and a deep vein thrombosis. A few months later I suffered a transient ischemic attack (TIA) also know as a mini-stroke. Further tests revealed I had a hole in my heart that had gone unnoticed since birth. I had was on the scariest health roll coaster ever, and the issues had nothing to due with my weight. Although I am thankful that by this time I had my health on track or the stroke could have been worse.
In my journey, the weight I lost was not nearly as important as the strength I found in myself.
After a year of seeing numerous specialists and opting to have the hole in my heart closed, I then proceeded to have reconstructive surgeries to have excess skin removed. I also had to have a hernia repaired twice. The medical roller coaster involved more than just hospital and doctors it include learning to deal with insurance companies. I learned a lot, I had to fight a lot for coverage. I appealed and won on many occasions. It was a process I understood, I process others did not and I found myself helping friends and co-workers when they had insurance issues. I then decided to change careers and returned to college to get a degree in Health Services Administration. Graduation was timed quite well, just one month before my position at my job was eliminated and I was laid off.
It took me a year to find a new job, but I survived being unemployed. I learned to cut back on household expenses like cable. I sold items I no longer needed. I was resourceful, a problem solver, I focused on the positive: I got to sleep in for an entire year! All jokes aside, the new job was not as expected. I experienced weight and disability bias and was not being judged on my appearance instead of my skills and abilities. If you have read this far you will understand why I was not going to accept that type of treatment. I had not worked as hard as I did to improve my life situation to be judged on my appearance. I did not base my worth on my appearance and I was not going to accept others doing so. Of course the more I stood up for myself against the bias, the more attempts were made to knock me down. Having had successfully survived unemployment in the past I was not scared of what the outcome was going to be, I was not going to waiver on standing up for myself. That job ended as expected.
While all this was going on in my life, my weight was also increasing. I even had a revision to my RNY in September 2010, and still my weight is back up to 400lbs. I can debate the reasons, I can defend my habits, I can point to Lipedema and the still many unknowns about the condition.
I choose to accept it, no I’m not “giving up”…I am, as I always have, accepting myself.
Just as being fat was not the source of my life problems over a decade ago, regaining weight does not take away or diminish all that I have accomplished and challenges I have overcome.
I still have my education, I still have my resilience, my survival skills. I have a new sense of adventure. I have a new sense of purpose. I have someone very special in my life who supports, encourages and accepts me…he’s also very handsome and makes me laugh…oh and gives good back rubs.
A change in weight does not change all the good that I have in my life.
I still have fat arms, a big butt, and huge legs. However, I also still have a beautiful smile, cute dimples and an awesome personality. Those attributes cannot be measured on scale, and if they could that scale would most likely read “OVRLD” just like my regular scale.
Why don’t I hate being fat? Because I don’t hate myself, I never have and I never will.
National Health Blog Post Month Day 28 – A Time to Give Thanks
What’s the one thing you’re most thankful for? Write a list of three things that you’re thankful for, excited about, or inspired by.
I am most thankful for my fat. My fat is a part of who I am, more than just physically. My fat has made me stronger, kinder, and a more resourceful person. My fat makes me unique. Despite the challenges in life having Lipedema, and the excess fat, have presented I take every moment as a learning experience and I continue to move forward living the fullest and healthiest life possible.
I am most excited about 2014. I plan on attending several conferences, many to which will be first time conferences for me and I look forward to the information and opportunities.
I am most inspired by the new friends and fellow Lipedema patients I have made this past year.
National Health Blog Post Month Day 18 – Three Truths and a Lie
Tell us three things that are true about you, your condition, your Health Activism, or your life. Now tell us a lie. Do you think we will be able to tell the difference?
1. I’ve been told “you are what we read about in medical books.”
2. I once showed up in person to my insurance company’s office to check on the status of an appeal.
3. The sight of needles makes me squeamish.
4. Anytime I get new insurance coverage I request a copy of the Plan Document and I read it thoroughly.
Take guess…which one is the lie?
As part of ObesityWeek 2013 new guidelines for the treatment of obesity were released. The media has stated the guidelines are encouraging doctors to “get tough”, “be aggressive”, “take serious action” when treating obese patients. The actual guidelines do not use such harsh language, and it is bothersome that the media puts the “let’s get tough on the fatties” spin to the stories. As a patient who is obese, I believe the guidelines leave out two very important pieces to the treatment of obesity: identifying the cause of the patients’ excess weight and ensuring healthcare offices can adequately access and monitor obese patients.
Focus on the patient, not their weight.
I have always been frustrated by doctors who blamed my medical issues on my weight, yet never offered real options for losing weight. So the suggestions that doctors get serious about a patients weight and go beyond the obvious “you need to lose weight” and actually offer and prescribe nutritional counseling and activity for how to lose weight will be helpful to many patients. However, I believe dietary changes and exercise should be recommendations to ALL patients with heart disease, diabetes, high cholesterol, and high blood pressure. While excess weight can increase risk for these conditions, they are not exclusive to individuals with a high BMI.
What causes obesity?
Diagnose before offering treatment. There are many conditions and medications that can cause excess weight, doctors need to thoroughly examine the patient and address the actual cause of the obesity.
Yes, this is where I get on my Lipedema and Lymphedema soapbox. Both conditions are noticeable to the trained eye, the problem is there are not enough physicians who are trained to make a proper diagnosis. Instead, many patients, such as myself, are told to lose weight and when we do not lose weight as expected we are deemed non-compliant. And that label affects the way we are treated for all health issues. All my health vitals are normal, and should indicate that I live a somewhat healthy lifestyle, however there is still a focus my weight. For years, my weight increased while the actual cause of my weight, Lipedema, was not diagnosed and progressed to a stage further complicated by the development of Lymphedema. While the my health vitals, were normal, the Lipedema and Lymphedema was very much affecting my overall health. I developed severe cellulitis, and often required hospitalization for IV antibiotics and eventually needed a medi-port. During the hospital stays I contracted MRSA in the medi-port, that goes directly to my HEART. This greatly affected my mental and emotional health, as did the limitations on my mobility the conditions caused and the frustration of not getting any other explanation for what was happening with my legs than “it’s your weight”.
Accuracy is VITAL
As much as I was told the issues with my legs were because of my weight, the fact was my weight was unknown. The doctor’s office did not have a scale that could weigh me, nor did she attempt to locate a scale that could. On my own, I went to a local junk yard to weigh myself. No patient should have to make the effort to get their own vital health statistic. While that was ten years ago, I find today’s doctors offices are not any better equipped to care for patients with high BMIs.
In order for doctors to take obesity more seriously, they will need to have an accurate weight for patients. Currently, none of my doctors have scales to weigh me, yet, they all document the known incorrect weight. One office’s scale has a 300lbs limit, but it does at least register 328ish when I step on it. So the nurse documents that as my weight, even though I tell her that is not correct, and verbally give her my weight from my home scale. Again, this isn’t an issue in just ONE office, I encounter this problem is probably every doctors office I visit, expect for the bariatric surgeons office.
After the game of guess my weight, comes the torture of having my BP checked. Yet, another VITAL health statistic that is often not correctly taken nor monitored in obese patients. If the BP isn’t taken correctly, it is not an accurate reading, and thus monitoring inaccurate data serves no purpose. The blood pressure cuff needs to properly fit the patient’s arm. Cuffs that are too tight will give inaccurately high readings. Doctors’ offices need to have large cuffs, even thigh cuffs available, and staff need to know the where the cuffs are kept so patients can have their BP taken correctly.
Also, stop relying on BP machines, they are not accurate, especially on FAT arms. Every time my blood pressure is taken with a machine, it has to inflate twice then reads high. Again, I will let the nurse know the information is not correct, yet it gets documented in my medical record. My last employer’s wellness program was told I had high BP and I was put on a “plan” to reduce it”, which thankfully I did rather quickly by having my regular doctor submit my REAL blood pressure, which she gets by manually taking my BP using a thigh cuff. In addition, staff should be trained on how to take a blood pressure reading on the lower part of the arm, in case no cuff is available to fit the upper arm. Also, wrist blood pressure cuffs should be utilized.
Better scales and larger BP cuffs are not expensive items for doctor offices to purchase, and yet are very important tools to properly diagnosing, monitoring and treating patients.
Does your primary care doctor have a scale to weigh you? Share with me your experiences in the comments.
This is the article for which I had My Abnormal Photo Shoot. In late August, I replied to a Facebook notice shared by the Obesity Action Coalition. Being a member of the OAC has provided many opportunities to share my story, and thus spread awareness about lipedema and lymphedema.
Does my fat make you uncomfortable?
According to the article that is YOUR issue, not mine. I knew this already, but I admit I misunderstood the article concept as originally told to me: “story about the experiences of those with physical differences—and how, on both a societal and individual level, we can overcome negative or prejudiced responses.” I thought the article was going to focus on those of us on the receiving end of the negative and prejudiced responses. Through my own sessions with a psychologist, I learned I cannot change other people’s behaviors, I can only control my own reaction. To my pleasant surprise the article’s focus is on the response people have when they see a person with a physical difference. It is a refreshing change for the discussion to address why some people have such adverse reactions to ME, since it is usually just accepted that it’s normal for people to act in such ways towards people who are abnormal. And yet, it’s not normal. Not everyone who sees me has a negative or prejudiced response, if that was the case I would not have so many supportive friends. So what does prompt the negative response?
The theory discussed in the article is that people’s negative and prejudices reactions towards physical difference is rooted in an immune response and survival instinct protecting against disease. Interesting idea for sure! And does go along with the idea that people project their own insecurities towards me. The personal stories shared tell of instances for which we have experiences negative reactions based on our appears, mine included the now famous “check out them cankles” incident. It is inspiring that the other individual profiled in the story have the same positive attitude and outlook as I do and the hope that by sharing our stories we can help others.
Research suggesting that prejudice is a flexible trait abounds — and simply being aware that it’s not fixed can significantly reduce discriminatory behavior. Accepting that we all hold negative associates and becoming aware of the one we automatically make are also critical steps in the process of counteracting our biases. So, too, is encouraging people to talk about their negative perceptions.
My abnormal appearance is beneficial in life, it serves as a screening process. If people do not want to get to know me because of my looks, their loss. Now sure, it hurt when I experienced weight bias in the workplace but obviously that was not a company whose values align with mine.
Leave me a comment:
Have you read the full article? Share your thoughts.
Does my appearance make you uncomfortable?
Have you ever experienced a negative or prejudiced reaction to your appearance?
National Health Blog Post Month – Day 9: Just admit it!
It’s taboo. Write about something that people do but don’t like to talk about or won’t admit to doing.
Nothing stirs up debate within the weight loss surgery community like a discussion about drinking diet soda. Rumors and scare tactics surround the consumption of carbonated beverages from being the cause of regain to causing pouches to explode. Surgeons’ post-op protocols vary on whether or not weight loss surgery patients should consume diet soda. Some surgeons say NEVER, some say whenever as long as the bubbles don’t bother you.
My surgeon’s protocol was the latter, actually my nutritionist’s recommendation was I could try diet soda, and if it didn’t bother my stomach I could have it in moderation. So I did, and I do drink diet soda. The moderation part….um not so much.
My name is Sarah and I’m addicted to Diet Mtn Dew.
There I said it. I admit it. I do not deny I drink diet soda. It is probably my one unhealthy habit. I do not drink alcohol, I do not smoke, let me have my diet soda!
I’m not the only one. Yes, I do know many post-ops who have forever given up their bubbly soda. Kudos to you. You are stronger than I, although I’m sure there is something you enjoy, and enjoy probably a bit more than you should. Don’t we all have something we over indulge in?
Drinking diet soda is so taboo that many post-ops hide their drinking. Which is odd in a community that so opening partakes in drinking alcohol. At an event a few years ago I actually had a fellow post-op question why I was drinking Diet Coke, when I should be well aware of it’s relation to regain. He was drinking bourbon or whiskey on the rocks. Really?
It’s interesting watching fellow post-ops “hide” their diet sodas at events. I’ve seen it poured into cups to hide, or taken in grocery bags to rooms for private consumption. As if there is an “image” to uphold and we must not let others see us being real humans who drink diet soda. When I attend events I drink my diet soda straight from the original bottle or can, and in public. It’s interesting to see others reaction, I was even asked “where I got the contraband?” Seriously, it’s diet soda, not crack. Are we not adults capable of making our own choices?
It could be worse, it could be regular soda. Right? I know, the studies say…………..
But there are so many chemicals. Excuse me but take a look at the ingredient list on your protein shake.
So let’s be real each other, we are humans, we are not perfect…actually I have a confession to make. The other day I mentioned that I took a couple Advil for pain in my legs. I was asked if I ate something with them since NSAIDS are also a supposed “no – no” in the WLS world. I assured the person I take proper precautions, as I also take a daily aspirin for medical reasons.
The truth is yes, I ate something…I washed the Advil down with Diet Mtn Dew and two cookies.
So tell me, do you drink diet soda? Energy drink?
Physically, my arms and legs are heavy and extremely sensitive, the excess weight causes pressure and pain in my joints and tires me out very easily.
Mentally, I struggle with the reality of having a progressive condition to which little is know, and to which few effective treatment options exist and are not readily accessible or require insurance appeals to get covered.
Emotionally, I live in fear of when my next bought of cellulitis will occur. I am judged and stereotyped based on my appearance. I have been discriminated against in the workplace, and been denied proper medical treatment because of weight bias and stigma.
I often ask WHY ME?
A few months ago I made a pretty risky life decision, but one I felt was best for my overall health. I have returned to college and revived this blog and focus more on advocacy. Sharing my story publicly opens me up to comments and feedback, I have been warned the internet is can be a not so nice place. I know this…but I also know that awareness needed and I must continue speak up.
But WHY ME?
A college friend sent me this message a few day ago that answered that question:
“Though you’ve always had a voice, we are both great talkers. I believe you have truly and finally found YOUR voice. I think you’ve landed and are doing exactly what you should be doing. Perhaps you were given your conditions so that you can use your ability to talk-and unabashed ability to speak your mind so that those who aren’t as vocal (and I mean that in a great way) have someone on their side to encourage them to speak up when things go wrong.”
In her Hot Topics segment (at 8:30), Wendy Williams discusses Ruben Studdard’s performance on The Biggest Loser then suggests he get Lapband surgery.
First, I think it’s completely out of place to be discussing his weight on her show in this manner.
Second, Wendy Williams got her MD when?
Third, the decision to have weight loss surgery is a personal decision that should be made with counsel of one’s own physician not a talk show host. There are also more options for weight loss surgery than Lapband. There are RNY gastric bypass, vertical sleeve gastrectomy, and duodenal switch.
Earlier in the segment she made comments about how Gov. Christie did not appear to have lost that much weight since his Lapband surgery. (3:45) “Can I just talk about this surgery he got for weight loss? What happened…like I don’t notice the difference.”
So Wendy, you talk about Gov. Christie for not losing enough weight with Lapband surgery, but you suggest Ruben should have the same surgery to help with his weight???????
I’m aware that Wendy Williams is know for dishing on celebrity’s’ looks and that she too has her own critics, however, the line here is crossed when she offered medical advice.
National Health Blog Post Month – Day 6: Say What?
What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?
The most often heard and reason I advocate and share my story of living with lipedema is that the condition does not exist, that’s is merely an excuse for being fat, blaming genes. The most frustrating is when those comments come from medical professionals. Even those professionals that had heard of lipedema, knew of it to be very rare, so rare they doubted I actually had the condition. The assumption is I am a non-compliant patient. Even when keeping food and exercise journals, I would be accused of lying, as my food intake would not account for my lack of weight loss.
A few years ago a doctor on Twitter told me I most likely did not have lipedema and lymphedema, “probably not Sarah. those syndromes are very rare & present in early childhood, often accompanied by other birth defects.” I blogged my frustration. It would be such a relief if I really was just fat, that would mean I could actually control my weight through diet and exercise, but the conditions are real, very real.
As I meet more and more women who have lipedema, and hear their stories of struggle to have medical professionals recognize and diagnosis lipedema I no believe lipedema is a rare disease, I believe it’s merely under diagnosed.