Wednesday, May 5, 2010

What would you do without me?

I'm not being egotistical, I really want to know HOW someone who hasn't had as much medical experience as me or who doesn't have a mother who is an RN handle major medical situations with lack of instructions???

I'm helping a friend after surgery. Issues so far:
  • Follow up with specialist (one was called into OR): We get told new patients can't be seen for a month, yet there is something that needs treated in a week. It gets resolved and appt. in a week.
  • Discharge instructions state if you have XYZ contact Dr. Green. XYZ occurs but no one knows who Dr. Green is, there is no phone number provided. I looked on hospital's website and no Dr. Green in that specialty. So we called the Dr. to whom we have an appointment with and are told...since you haven't been seen yet, you need to call whoever treated you in OR...HELLO, friend was unconscious in OR so we don't KNOW who was there!!!! Called mom and was told XYZ is normal don't worry. Also called PCP and got a new specialist.
  • No instructions regarding changing bandages, no how to, or how often. Luckily, I've been through this myself and I've watched how my mom cared for me, so I know what to do. I had to call and ask how often, I was asked "how often are you doing it now"...I replied "we haven't because we were waiting to call you".
  • No instructions as to bathing. Typically, instructions state either yes or no.
  • Sent home with binder that does not much for wearing it to reduce swelling.
Once after one of my own surgeries I had to find a medical supply vendor who took my insurance, even with the help of a nurse case manager it was difficult. I called every DME nearby, I refused to send my mom out searching any further than 10 miles. Finally, the nurse found a mail order vendor. But then the NURSE asked me, "wow, how would others be able to do this, elderly aren't as internet savvy as you are."

EXACTLY...what do other people do???

Wednesday, April 28, 2010

Cruel and Unusual

Ohio thinks so.

I went for my follow-up endoscopy this morning. I will admit I wasn’t in a good mood from the very beginning. First, the endoscopy was suppose to be two weeks ago but the day before I found out the hospital now expects full deductible the day of service. I offered partial payment, I was told sorry we want more. I wrote an e-mail to complain about my treatment and was fully aware to have money this morning. Second, the hospital layout is confusing and signage sucks. This is a newly acquired hospital but within the same system which I have sought treatment for six years. So even though this was my third visit there in a month I’m still getting lost. So once I made it to registration at 6 AM, I was irritated, hungry, tired and cold.

I finally get registered pay the balance of my deductible and the nurse calls me back to prep area. They do a pregnancy test and tell me change. Oh, you know how nice I thought it was that this hospital had oversized chairs in the waiting area? Well, they did not have a large gown. The nurse had to go over to another department and borrow one. So I change and get in bed. Which was GREAT because for past procedures they have tried to start the IV and then have me wait more until the exam room was ready then want me to change clothes etc with and IV in my arm.

Here’s my IV issue. I have ONE good vein. It’s a very good one, but if you miss it then well I don’t want to think about that. I was told of this “good” vein when I was 11 years old and being tested as a possible bone marrow donor for my sister. The guy who took my blood (probably the first time I had ever had blood drawn) told me “you have a very good vein here, remember to tell people where it is in the future”. And that I have. Today, however, they refused to listen.

My nurse and his assistant could not see or feel the vein. I’m not sure how that is, but they decide to have the anesthesiologist come in and try. Now I have been in the hospital numerous times, had many procedures…my IV access is non-existent except for this 1 vein. Over the years people have tried my hands, feet, even my wrists with no luck. As for my wrists, they are OFF LIMITS. I have let them try once and no success no one gets to try again. It’s a mental thing I know, but it’s pointless for them to try given the emotional trauma this would cause me. During longer hospital stays I’ve required a central line, and I’ve even had a medi-port. But my good vein usually holds up for short procedures like today.

So the anesthesiologist said he does not even want “stick me for no reason” since that vein has a valve and can’t take the catheter. I explain to him that it’s been used for IVs numerous times, to which he then says “exactly” it’s over used and won’t work anymore. WTH? At least try!

So he looks at my hands and wants to try for a vein in my center of my wrist. I say no, and I point out a few other spots that people have been successful in the past, not often but yeah this one time someone got an IV to work there. He looks but doesn’t try. Instead he goes for a vein in my hand right below my thumb.

FAIL. <-- Just as I told him…no one has ever gotten an IV in my hands.

At this point another guy came in and started looking as did two female nurse anesthetists students. So I had a guy search each arm and the nursing students putting tourniquets around my ankles looking for a vein on my foot. I’m trying to show them all the other spots and mention that in the past they’ve had to use my neck.

PSA: Needle sticks are contraindicated for lymphedema affected limbs. Not to mention the tourniquets hurt like at muthaf***.

Given the difficulty I didn’t play the lymphedema card, I let them look. But once again, been there done that. People have tried and failed at starting an IV in my foot.

He tries to start one on the inside of my upper right arm. FAIL

I decide to strike a deal. TRY my “1 good vein” and if that doesn’t work I’ll let you go for my wrist. This is HUGE on my part. Oh I added, and if you do my wrist you need to drug me ASAP.

And still he REFUSED to even TRY. His reply “I know it’s not going to take the IV catheter and I don’t want to stick you for no reason.”

Hello what do you think you’ve been doing the past 2 times???

So then the other guy goes for a vein in my left foot. I cringed from the initial pain, but it was nothing I hadn’t endured before. But then he started “the dig” and I scream “OUCH”, I’m also so emotionally upset by all this I start crying. I scream again from the pain and ask that he please stop if it’s not working. He replies “you have to let me get to the vein”. The students are trying to comfort me as I ask a 2nd and 3rd time that he please STOP since it’s obviously not working…just like it has NEVER worked.

He stops.

Again, I offer my neck. The guy has me turn my head and within minutes the IV is in…finally.

During all this the students were asking me questions. One of them was “have you ever had issues with anesthesia?” My reply “only THIS issue”.

I really do not understand why he would not try the ONE area I told him had a good vein, the area that has work 99% of the time. He said I know you know your body, but I know my job. WHATEVER.

After that, everything was smooth. I had the endoscopy but won’t know the results until I see my surgeon next week.

Thursday, April 22, 2010

Perception: Skinny People Aren't Lazy But Overweight People Are

From Medical News Today:

Research at the University of Alberta shows that when a thin person is seen laying down watching television, people assume they're resting. But when people see an overweight person relaxing, it's automatically assumed they're lazy and unmotivated.

Tanya Berry, from the U of A's Faculty of Physical Education and Recreation, says these stereotypes about overweight people need to be addressed. Berry says just because a person is overweight, it doesn't mean they don't exercise, and just because a person is thin, it doesn't mean they are fit and healthy.

Berry had a group of study participants look at a number of pictures that would flash on a computer screen. After each photo a sedentary word such as "lazy" would appear. After the participants looked at each picture they were asked to say the colour of each word. Berry says when a picture of a thin "couch potato" came up, the participants were quick to say the colour of the word that appeared. But when a photo of an overweight person lying down appeared, the study participants paused. Berry concluded that the slow reaction resulted as the stereotyped thoughts automatically set in, with the participant thinking about the person being lazy rather than thinking about the colour of the word.

Berry says the research is important because stereotypes can influence the way people behave. She believes that more awareness of stereotypes can help people counter the effects. For example, if you're aware that you hold a stereotype about a couch potato you're less likely to be negatively influenced by those stereotypes.

Carmen Leibel
University of Alberta

FOX and ABC refuse to air Lane Bryant Ad

The Huffington Post reported:

Lane Bryant Accuses Fox And ABC Of Refusing To Air Plus-Size Lingerie Ad (VIDEO)
First Posted: 04-21-10 11:34 AM
Updated: 04-22-10 09:29 AM

Plus size clothing retailer Lane Bryant criticized Fox and ABC for refusing to air a sexy lingerie commercial, but later deleted an accusatory post on its Inside Curve blog saying the networks embrace a double standard of beauty.

AdWeek still has some of the text of Lane Bryant's post, which read:

"ABC and Fox have made the decision to define beauty for you by denying our new, groundbreaking Cacique commercial from airing freely on their networks."

The post also claims that ABC "restricted our airtime" and refused to air the spot during Dancing With the Stars, while Fox "demanded excessive re-edits and rebuffed it three times before relenting to air it during the final 10 minutes of American Idol, but only after we threatened to pull the ad buy."

The post continues: "Yes, these are the same networks that have scantily-clad housewives so desperate they seduce every man on the block -- and don't forget Bart Simpson, who has shown us the moon more often than NASA, all in what they call "family hour."

"While it's no secret that Victoria's Secret 'The Nakeds' ads are prancing around on major networks leaving little to the imagination, steaming up TV screens and baring nearly everything but their souls, our sultry siren who shows sophisticated sass is somehow deemed inappropriate ... Does this smack of a double standard? Yep. It does to us, too."

What do you think? Let's remember not only do Victoria's Secret commercials air regularly there is also an annual primetime fashion show that airs on CBS.
Here's a comparision:
Lane Bryant

Victoria's Secret  

Perhaps this is just proof that full figured women are sexier than skinny chicks????

Teen Beauty Queen Dies from Stroke

I share this because I had two mini-strokes in my late 20's. I had some risk factors, weight being one of them. This young women didn't seem to have any, unless there was a family history.

Very scary and sad. Grab a tissue before you watch.

Monday, April 19, 2010

Why I waited.

Since 2002 I’ve been in 6 different hospitals in 5 different cities, the total number of admissions I cannot remember. I would guess close to 20. In addition, I have had 4 upper GI’s, 2 colonoscopies, 2 endoscopies, 1 trans-esophageal endoscope, 1 MRI, 5+ Echocardiograms, 6+ CT scans, 1 medi-port placement, 1 medi-port removal, 1 IVC filter placement, 1 IVC filter removal, 2 hernia repairs, 1 PFO (hole in my heart) closure, 3 right to left shunt studies, a bazillion tiny bubbles injected into my veins.

I’m sure I’m missing a few things.

Last year was a “healthy” year. I met only $53 of my yearly deductible, spent 0 days in the hospital for the first time since 2002. For the record, I had NEVER been in the hospital prior to 2002.

So when asked “why did you wait so long to seek treatment?” I can honestly say I didn’t want to go back ‘there’.

I’m not normally one to avoid treatment. Given my medical history I often seek treatment for the things most normal people wouldn’t worry about. When the scale started to creep back up in 2007 I attributed it to stopping the Topamax. When the regain exceeded the amount I had lost while on Topamax I was more concerned, but I had had the tests and been told everything was o.k. inside. I tried to get things under control on my own. When that didn’t seem to be working and I read that my heartburn could be related to a surgery complication and my regain I decided to seek treatment. I saw my PCP first hoping she could do something for me without tossing me back on the medical rollercoaster. Sadly, her response was “that’s not my area, go see the surgeon”.

So I go.

And here we go again…my year of good health was nice while it lasted.

Thursday, April 8, 2010

It's not a love seat.

I accompanied a friend to his CT scan this afternoon. I’ve been to this hospital many times, they have recently remodeled the radiology waiting rooms and it was a nice surprise to notice they had a few oversized chairs to accommodate larger patients.

It was annoying and even comical to see two normal sized people approach it as if it was a two seater. One very slim couple successfully sat together. Another set of normal sized adult sisters tried their best to sit together, if I didn’t have manners I would have taken a picture of them squeezed (one half on, half off) in the chair. Eventually, one moved to the next chair. Perhaps the chair should have a fatty label on it.

“Your ass must be at least this wide --------- in order to sit here”

Thankfully, my ass fit comfortably in the regular chair. But it’s nice to know hospitals are thinking.

Wednesday, April 7, 2010

Information Overload

The internet is such a vast resource of information. That is a good and a bad thing. I like that I can research, but then I always seem to do “this” to myself.

My brain is full of information and I’m obsessing about the “what if’s”. I’m a planner and this crap is messing with my plans.

Will I need to have my hiatal hernia repaired?

If they wrap the top portion of the stomach around to fix it, how will they do that with just a RNY pouch?

How long will recovery be?

I’ve read 7 days in the hospital on one site OMG this is more serious than I thought.

I know these are great questions to ask my surgeon…but I want to know NOW. So I post on a hernia forum, and the one reply I get back FROM A DOCTOR is that the acid reflux is most definitely because of my recent weight gain. Thanks doctor, as if I’ve NEVER been told a medical issue is DUE TO MY WEIGHT. And how many years of medical school did you have to complete to make that great conclusion?

Tuesday, April 6, 2010

No Chubbies.

I'm watching Dr. Phil. The show today is the Ultimate Fat Debate. There is a guest named Michael Karolchyk, owner of the Anti-Gym who is wearing a shirt that says "No Chubbies". He is the perfect example of what I've found in most commercial gyms. If he thinks he is helping the obesity epidemic with that method he is wrong, however, watching his video I see no obese members of his program. This is what I've found in my quest for assistance with an exercise program, gyms and trainers are for skinny people.

First, most machines cannot accommodate obese (morbidly or super morbidly). Treadmills and elliptical machines do have weight limits, and weight machines don't allow room for big legs and bellies. I started my workouts at 500lbs in the water, my swimsuit didn't fit, but I wore shorts and t-shirt over it because I was determined to get in the pool. However, it can be difficult to find a pool with steps; obese people have a difficult time with pool ladders.

Second, personal trainers don't seem to want to help the obese. I did find Matt at the SOMC Life Center to be helpful, but that was a hospital based gym. At Bally's, LA Fitness, etc, they aren't interested in really helping. I sign up and show up; as soon as I mention I have a medical condition that might limit what I can lift I'm deemed "not willing to try". I do try, I never refused to do a workout, but I notice while I'm working out the trainer is looking at other chicks. I later find out he didn't have the machine seat level properly set for my height. I inquire about water workouts and I'm told "they are not a good workout". Never was asked for detailed medical information. While I was on an upper body weight machine he noticed the scars on my arms and asks "are those surgical scars?" Sure are...and even then he didn't ASK for any further information.

I just mentioned this to a friend last week. I would love to partner with a personal trainer/exercise physiologist and develop REAL workout program for someone with lymphedema/lipedema. I live in Miami; there are tons of trainers around here, anyone interested in the challenge?

Saturday, April 3, 2010


I don’t really believe in luck, well I don’t believe I have any luck…except bad luck.

But if you asked me for a lucky number, I’m going to say 7. I just like that number. I’m #7 in my family, born in 1977.

Today I’m 7 years post-op RNY gastric bypass surgery and I am lucky to be alive.

I sometimes have to remind myself of that.

Yesterday, I found myself questioning if surgery was worth having. There I was once again having a diagnostic test, my 5th upper GI in 7 years, and I thought “is this what my future will be? How many tests will I need during my life to check for possible complications of surgery?” Then I went to an appointment with a friend who has lost over 150lbs on his own. The receptionist in the office asked him if he had “the surgery” and he replied, “No, my insurance wouldn’t cover it, so I did it the old fashioned way”. I razzed him a bit about saying that, but honestly it doesn’t bother me because everyone is different.

But it did make me think more about if having weight loss surgery was worth it. And the answer is had I not had surgery and lost the weight I did, when I did, I wouldn’t be here typing this right now. The mini-stroke I had in 2004 would have been a full blown stroke and I would have died in my small town hospital. I have many medical issues and only a few have been a result of surgery.

Friday, April 2, 2010


I had an Upper GI this morning and the preliminary findings were reflux, hiatal hernia, and Barrett's esophagus.

I'd first like to send a big THANK YOU to my insurance company who several years ago denied payment for Protonix which I had been on since 8 months after surgery, only stopping for h-pylori treatment and retesting. Continued taking the rest of the prescription, but upon refill was denied. Oh well, I felt o.k. until a year ago when I found myself popping Tums everyday. My PCP then gave me a sample of Nexium and it helped, so I was approved for a year of it via prescription. Well it doesn't completely work now...and now insurance company you have had to pay for an Upper GI and will be paying for an Endoscopy.

Bet that extra Protonix isn't looking so bad right now.

So because I like "the Google"....

Mayo Clinic recommends lifestyle changes for Barrett's esophagus:
  • Maintain a healthy weight. Why can't I ever have a condition that says...gain weight???
  • Eat smaller, more frequent meals. Yes, I find myself grazing all day to keep the burning in my throat to a mininum.
  • Avoid tightfitting clothes. pants per doctor's orders.
  • Eliminate heartburn triggers. Caffeine...NOOOOO!!!!
  • Avoid stooping or bending. Stooping? So no dropping it like it's hot?
  • Don't lie down after eating. What about while more breakfast in bed. =(
  • Raise the head of your bed. Already sleep on 3 pillows with the top one doubled over.
  • Don't smoke. Other than being smokin' hot...this is not a problem.

Tuesday, March 30, 2010

In Search of Big Girl Panties

I guess I'm starting an "In Search Of" series. I found my Big Girl on to underwear!

I know my mama told me to watch what I say on the internet, and perhaps talking about my underwear is over the TMI line, but I’m very upset about this and I know I am not the only one having this issue.

It seems like in the past couple years the quality of panties sold at Plus Size retailers like Lane Bryant and Avenue has greatly decreased. They might as well be selling disposable panties since some pairs have lasted only a couple wears.

I have several pairs of panties from Lane Bryant that I purchased in 2007. They are still in decent shape, just normal wear and stretch of the elastics. However, I noticed when they switched from “Buy 3 get 2 Free” to “5 for $25” they also changed manufacturers and the quality was very poor. At first I passed it off as just the new change, and at that time I did e-mail Lane Bryant and expressed my disappointment. I figured by this time, nearly 18 months since the change, things would be different.

But the quality still sucks.

I need new panties because I’ve gained weight. I bought a bigger size at Lane Bryant in January and as you can see in the picture, the leg band completely detached from the material!

When I went home in January I noticed a pair of LB panties I had bought my mom had the entire backside of the waistband detached from the fabric. I asked if those were an old pair or a pair I had just bought her in November. She replied they were a new pair and that the detachment occurred the second time she wore them. I brought them home with me and they are in my “bitch” pile. The pile now has 4 pair, this is after I tossed several pair. While I find it a bit embarrassing to take panties back to the store, I guess if I’m open enough to write about it on the internet I should be able to go talk to the store manager.

But it’s not just Lane Bryant.

I was talking to a friend and she mentioned she had gone shopping at Avenue and then she expressed her disappointment in the panties she recently purchased. She said the material is very thin and after few wears and washing they fall apart. I shared with her my experience with Lane Bryant.

It’s very disappointing that these stores cater to the Plus Size customer yet can’t seem to provide a product that can hold up to the plus size booty. And you all know we pay a lot more for our clothing, so this is wrong on so many levels. In additon, Charming Shoppes which owns Lane Bryant also owns the other Plus Size stores Fashion Bug and Catherines, and I'm sure the poor quality can be found in those stores.

So where is a big girl to get some decent panties?

Again, I've gained weight and need new panties. So as much as I didn’t want to do it, I bought a 5 pack of Just My Size panties at Wal-mart. I must admit JMS never let my 500lbs ass down. I strayed to Lane Bryant because I loved the cute colors and being able to match my bras with my panties. And at 500lbs I couldn’t fit into the largest size at Lane Bryant. But I can’t be tossing what is now “5 for $29” down the drain on panties that fall apart. A JMS 5-pack was $9.99 and they now do have a variety of colors and styles.

So who else has noticed the poor quality from Lane Bryant and Avenue? What are you wearing?

Click here to send a complaint to Lane Braynt.

Click here to send a complaint to Avenue.

Monday, March 29, 2010

Going Global

Remember when you wanted to go outside and play because being in the house was boring? Now, the idea of kids going for a bike ride or playing tag outside alone is too dangerous. However, I used to ride my bike, walk to school, and play tag (Ghost in the Graveyard) with a group of friends and I was still a fat kid. Note the article states the kids are less active, no where does it state there is also a rise in obesity...that would be interesting to see the correlation.

Nearly Third of Children Globally are Couch Potatoes - From Reuters
Reporting by Anne Harding, Editing by Belinda Goldsmith

American children aren't the only couch potatoes with nearly one third of children globally spending three hours a day or more watching TV or on computers, according to study of over 70,000 teens in 34 nations.

From Argentina to Zambia, Regina Guthold of the World Health Organization in Geneva and her colleagues found most children aren't getting enough exercise and it made no difference if they lived in a rich or a poor country.

"With regards to physical activity levels, we did not find much of a difference between poor and rich countries," Guthold told Reuters Health. "Growing up in a poor country does not necessarily mean that kids get more physical activity."

The study, published in The Journal of Pediatrics, looking at 72,845 schoolchildren aged 13 to 15 from North and South America, Asia, Europe, and the Middle East. The children were surveyed between 2003 and 2007.

The researchers defined adequate physical activity as at least an hour of exercise outside of gym class at least five days a week.

Children who spent three or more hours a day watching TV, playing computer games, or chatting with friends -- aside from time in school or time spent doing homework -- were classified as sedentary.

The researchers found only one quarter of the boys and 15 percent of the girls were getting enough exercise by these definitions.

A quarter of boys and nearly 30 percent of girls were sedentary and didn't get enough exercise with girls less active than boys in every country aside from Zambia.

Uruguay had the highest percentage of active boys, at 42 percent, while Zambia had the lowest, at 8 percent.

Girls from India were the most active, with 37 percent meeting exercise recommendations, while girls from Egypt were the least active, with just 4 percent getting adequate exercise.

Children in Myanmar were the least sedentary, with 13 percent of boys and 8 percent of girls classified as sedentary. The most sedentary nations were St. Lucia and the Cayman Islands, with 58 percent of boys and 64 percent of girls spending at least three hours a day in sedentary activities.

While the study didn't look at the reasons behind the lack of physical activity in various nations, Guthold speculated that urbanization could be a factor as well as access to cars and TVs.

She said schools can help children become more active by having physical education classes and educating students about the importance of exercise.

Adding lanes for bicycles, pedestrian crossings and other changes to promote walking and biking to and from school could help too, she added.

"Even with the limitations that questionnaire data (suffer) from, I guess it's pretty safe to say that we have a huge problem with physical inactivity among schoolchildren around the globe and that we should take action," said Guthold.

It's all relative.

It’s hard not to compare yourself to others, and yet we all know that no two people are the same. I had to remind myself of that while talking to my mom after her recent doctor visit. She was telling me that her various levels are good and that she lost a few pounds since her last visit…then she told me her weight.

Excuse me? What was that?

She repeated it.

OMG, I weigh 80lbs MORE than my mother. My mother who wears 2-3 sizes larger than I wear? The mother who was JUST complaining about a store having neither electric carts or shopping carts so she wasn’t able to shop that long because she needs to either site and ride or push and lean. Now this is the SAME mother who works 12 hours shifts as a nurse, so I’m in no way saying she is lazy. By all means she does what she needs to do no matter how difficult it is for her to physically do it…I am thankful for that trait.

My mother and I are about the same height, I might be an inch taller than her, and of course she is double my age so the years have taken their toll.

But 80lbs?

Where am I hiding it? Oh that’s right in my legs…while my mother does have signs of lymphedema; it’s nowhere near the extent to which I suffer. But still, this makes no sense to me…and it’s not so much the numbers. Nor, is it just my mother. I have read of other people who weigh even 100lbs or more less than me and wear larger sizes. I don’t wear my clothes tight. It just doesn’t make sense, but is an example of why we can’t compare ourselves to others.

Wednesday, March 24, 2010

Anyone having issues?

Last night I attended my first WLS Support Group meeting since 2006. I am seeing a new surgeon, my third since surgery, and he wanted me to attend his meetings to see if might help me. He had inquired about my support group attendance post-op during my initial appointment. I explained that the hospital where I had my WLS was two hours from where I lived at the time, and so I was only able to attend a couple meetings. I typically either had class, was in the hospital, or recovering from a hospitalization during that first year post-op.

Then I moved to Miami.

After finally getting the recommended surgeon to take me as a patient I was REQUIRED to attend a certain amount of “support meetings”. The requirement and lack of meeting structure lead to a room of new post-ops wanting to get their attendance paper signed and leave. There were no topics, no speakers…just a group of people and a psychologist asking “anyone having issues they would like to discuss?”

Either no one would reply, or the same question would be asked every month…by someone new “am I losing enough weight?”

To someone in my situation, the meetings were not worth the time. I got my support online at And honestly I did. Even when I attended the two meetings at my original hospital I felt out of place. First, I was usually the only one in attendance that had my surgeon, and second I was the only one who had such a large amount of weight to lose…this correlated with the surgeon issue since my surgeon typically operated on the “high risk” patients. And most people weighing over 500 pre-op have mobility issues, or in general don’t get “out and about” as often as I did. I’m not sure that is the exact reason, but from 3 different surgeon's support meetings at 2 different hospitals I have yet to find people who are in a situation similar to mine…even without the lymphedema and lipedema.

So back to last night…

My first issue was that the meeting was held in the same hospital where I admitted for my DVT, I have not set foot in that hospital since then. The parking garage to hospital entrance is a bit weird, and as I was following the path I had flashbacks to being in pain and near tears trying to “find the hospital” 6 years ago.

While waiting in line at the security desk I played “are they here for the meeting too?” I get my visitor sticker and head to the conference room. But first I stop and get a bottle of Diet Sunkist at the snack bar. It was the BBGC in me…and I was thirsty.

So I get to the conference room and sign-in. The group leader, the surgeon’s nutritionist, was getting out his recent delivery of calcium chews. I say “oh, I have those at home they are good. But I haven’t tried the raspberry.” He was very nice, and I was impressed that there were samples at the meeting. There was also FOOD. Cheese and fruit platter for the win. I had run an errand before the meeting and while I had eating a protein bar before leaving my house, a few hours had passed since.

I sit next to another lady and ask her when she had surgery. “5 weeks ago”

Oh no…here we go….or so I thought. To my surprise there were 2 other patients there who were 7 years post-op, like ME. Unlike me, both appeared to be at goal.

The topic for the evening was “how to read food labels”. I was the star pupil by knowing that serving size the most important piece of information on the label. Next he passed out samples of the calcium, raspberry is pretty tasty! Then he opened the floor to general discussion “anyone having issues?”

A new post-op is having issues tolerating food and wonders if she is losing weight fast enough.

I raise my hand, and say I’m having the opposite issue. I can tolerate everything and that after my initial 250lbs loss, I’ve started to regain. I also let the nutritionist know I had an appointment to see him next month.

I forget his response to my issue, I think because he was interrupted the male 7-year post-op patient who said. “You know what I’ve noticed is there a correlation between members who regain and members who don’t attend support group meetings.”

I guess it’s better than him calling me out for my Diet Sunkist.

Trying to not sound defensive, I said “I’ve noticed that many people in my situation are often too embarrassed to seek help from their surgeon or a support group.”

Then the nutritionist said, “O.k. are you all ready to go next door?”

Next door? Huh? Oh, the post-ops go over the pre-op seminar and answer questions. Nice.

Honestly, I didn’t mean to not go, I stopped to ask the nutritionist what he would like for me to bring to my appointment then once I got next door, I saw all the other post-ops on stage, announcing how long it had been since their surgery and how much they had lost. OMG I was definitely NOT going on stage, especially since I weighed MORE than many of the pre-op patients. And, of course, I had not had surgery with that doctor so I really shouldn’t appear to be one of his products.

So as I listened to everyone’s stats…the average amount lost was 130lbs. That’s how much I’ve lost, even with the regain; I’m still down 130lb from my highest….at 7 years out.

Monday, March 22, 2010

Making Waves

I went to water aerobics at the YMCA tonight. I took a friend with me. I kicked his ass, nearly had to save him in the deep end. It was reminiscent of when we got caught in the riptide last April. He blamed the flotation device, not sure if he meant the float belt or well um…I’ll be nice. =) Sure fat floats, but that’s part of the skill of deep water exercise is using your core muscles to balance and control your movements.

After class, I went to the members’ desk and asked if I could get a refund for credit for my dance class. I filled out the form, stating my reason as “class above my skill level”. Hopefully, I’ll at least get partial credit.

Sunday, March 21, 2010

Jamie Oliver's Food Revolution

Tonight Jamie Oliver's Food Revolution debuts on ABC.

The series focuses on the people of Huntington, West Virginia. In 2008, Huntington was named the Nation's Unhealthiest City.

I am particularly interested in watching because I grew up just an hour down river from Huntington. I would guess that my hometown was used in calculating the over all tri-state area level of health. A sad reality I've noticed when I grocery shop at home is that the healthier foods I buy cost more in my hometown than they do here in Miami. Only recently has the WIC program covered fresh fruits and vegetables. I look forward to see what progress Jamie was able to make, and how many eyes across the nation will be opened.

Saturday, March 20, 2010

So you think I can dance?

Well, I did at least try…and that’s what counts, right?

Last night was the first night of my Beginner Adult Ballet/Modern dance class at the YMCA. This is the class I mentioned being excited about, but has to switch sessions because I was sick and was going to be out of town and didn't want to miss two classes of the last session.

So it was me, woman who minored in dance, and the instructor.

There was a kid’s movie event in the next room so we had an audience through the windows…and yes one kid stood with his face against the glass staring at us almost the entire time.

Things started out well. Warm up stretches seated on the floor. Pass.

Then she brought out the bar. Plies, position 1, 2 and 3…foot ON the bar. Total PASS!

Next…jumps. This is where the beginner part ended and I felt like WTH? Total modification time. Just bounce instead of full jump…and it was still a FAIL.

Ballet over time for Modern…Skip jumps! Diagonal across the entire studio. So we’re jumping and running. OMG

So I reach back into my kindergarten days and remind myself how to skip. And I give it the old college try. My 4 jumps would barely get me ½ across the studio while they made it all the way across. But surprisingly I wasn’t any more short of breath than they were.

Ok now skip jump forward, and kick slide backs. Near collision. FAIL

And finally choreography time. Because this is session II of Spring, they have already been working on this during session I and for Fall the YMCA rented a theater and all the classes performed.

Uh, I don’t think so.

While class is wrapping up, I see my normal Friday night water aerobics crew head to the outdoor pool and I thought “why the hell am I in here when I’d rather be out there?” And I could have taken my bathing suit and joined the other class late, but for the first night I wanted to just see how things went.

As I’m walking out I notice the “sponsor” of studio.

Not sure if I will return. Not their fault. Just doesn’t seem to be the right fit.

Thursday, March 18, 2010

March is DVT Awareness Month

DVT stands for Deep Vein Thrombosis. Click here to assess your risk for DVT.

My personal experience with DVT occurred in September 2004. I developed a severe case of cellulitis in my legs and was admitted to the hospital. Because the symptoms of a DVT are similar to those of cellulitis doctors typically ordered an ultrasound of my legs to “rule out DVT”. Now for those of you, who think the pressure of an ultrasound is uncomfortable, imagine that pressure when your legs are in burning pain. So during this particular ultrasound I hear the tech say “no venous flow”. I asked her if I had a clot and she replied “the doctor has to give you the results”. Well of course I knew enough that “no venous flow” meant there was a blood clot and as soon as I was taken back to my room the doctor came in can confirmed. I had both cellulitis and a DVT in my left leg. I was given heparin and antibiotics via IV and was in the hospital for 10 days.

That was just the beginning….

Two months later, I had been cleared to receive compression therapy for my lymphedema. One morning as I drove to my appointment the entire left side of my face felt numb. I told this to my occupational therapists and I could tell by their response something was wrong. They were concerned if I would be able to safely drive back to work. I assured them I was o.k. and promised to call my doctor. I called the doctor when I got back to my office. Her office partner told me to go the ER if the symptoms did not improve, but given my age and that I was on Coumadin, she did suspect a stroke.

The symptoms went away so I didn’t worry.

Until a few months later when I woke up and my right arm felt like it was asleep and nothing I did would make it “wake up”. I went to my doctor and she ordered a CT scan of my head. The scan showed evidence of a stroke, but in the right side of my brain, so since strokes affect the opposite side of the body it was still unclear what was happening. My doctor referred me to a neurologist.

The neurologist suspected the episodes were TIAs (Trans ischemic attack) or mini-stroke. Thankfully, this was after I had lost nearly 200lbs or I’m sure things would have been much worse. Next, the neurologist ordered blood work, ultrasounds of the vessels in my head and neck and a consult with a cardiologist.

I tested negative for Factor v Leiden, which I knew I would, my family are bleeders not clotters. After a full blood work up I tested negative for any clotting issue.

The ultrasounds all came back clear. My vessels were fine. However, the shunt study showed that tiny saline bubbles injected into my veins were traveling to my brain.

Tiny bubbles….

Were crossing through a hole in my heart, bypassing my lungs and going straight to my brain. Just like the tiny little blood clot did. This was all confirmed by the cardiologist, who did an echo cardiogram and also injected tiny saline bubbles and saw them cross from one chamber of my heart to another.

I was 28 years old and they were just discovering that I was born with PFO (patent foramen ovale) a hole in my heart.

Thankfully, after further consultation among all my doctors the hole was easily closed with a tiny screen via a catheter.

It took nearly a year for the hole to completely heal over. I have several more bubble studies, until finally one day there were no more tiny blips on the screen which indicated bubbles. I was so relieved I broke in tears. It had been a nearly 18 month ordeal.

I am thankful that today everything is “normal”. I will always be at higher risk for blood clot and the numerous infections have damaged the vessels and valves in my legs. However, my neurologist and cardiologist have given me a clean bill of health and say I’m at no higher risk of a stroke than any other person of my weight and age…wait is that good?

I take a daily aspirin, stay hydrated, and take extra precaution when flying or taking long car rides. While the ordeal was quite scary at times, I now look at it as a blessing in disguise. Had I not had the DVT and TIA, the PFO would have not been discovered and closed.


Originally posted on my HealthInsuranceBitch blog.

It has been more than a year since I got my last pair of compression garments for my lymphedema. One pair. I should get two pair every six months. Since I should have a pair to wash and a pair to wear each day and the elasticity begins to wear out after six months. But as hard as it is to get one pair I have NEVER gotten four pair a year. Instead I wear the one pair I have over again for several days and then wash them and hope they are dry by the next morning. At least at this point in time I have some old pairs that I can wear, even if it means the worn out elasticity will allow my legs to swell, it’s still less than swelling than if I wore no garments at all.

I bring this up because I’ve had my garments for a year and yet my DME provider has yet to be paid. I’m past due for a new pair and yet I how can I get another pair when the provider hasn’t been paid from last year?

Oh sure, I could just pay out pocket. However, I’m currently paying COBRA out of pocket because I’m out of work. It’s more difficult to find a job when you have a chronic condition affecting your legs. If I could go work at Target or Home Depot and be on my feet all day I would. But I cannot.

The better option would be if my insurance company would follow their OWN policy and pay the claim.

Here’s the issue…and your lesson for the day, so get a pen and paper.


Since my insurance company has no in-network provider within a 50 mile radius of my home that can provide the medically necessary treatment my doctor prescribes my insurance company has to cover an out-of-network provider at my in-network benefit level.

Understand? I do. Obviously they don’t. Despite going over it EVERY YEAR…they still don’t seem to understand.

Due to the size and shape of my legs, my compression garments have to be custom fitted. Once made custom fitted garments cannot be altered. So if the measurements are not taken correctly, the $300 pair of garments are a waste of time and money. For this reason, the company only takes orders from certified fitters whom they train. So if a provider has no employees who are certified fitters, they cannot provide my garments for me.

My search begins with cross referencing the garment company’s list of certified fitters with my insurance company’s list of DME providers within a 50 mile radius of my home. That list indicated there were no DME providers in my network that could provide the garment I needed. To double check I called every DME provider on my insurance company’s list. I documented who I spoke with, and asked if they were able to provide the specific custom fitted garment I need. They all said no.

So then I contact my insurance company and request that I can go out of network at in-network benefit level. This process has gone different ways. A previous insurance company agreed and my out of network provider filed the claim and was paid. My current insurance company would not authorize, and the provider was leery of accepting direct payment because of past issues with the company. So I paid out of pocket and with the assistance of the provider filed the claim with all my documentation for reimbursement from the insurance company.

Last year, well about 13 months ago, in the hopes of saving the round-a-bout hassle that every time comes back to “there is no in-network provider”, I asked if the insurance company would just pre-authorize me to go out of network. I was told I would have to file the claim and appeal.

An appeal only costs me time and a stamp, while it costs the insurance company time and an hourly wage to pay some to process it. When in the end I will win, it’s been established, I am right in this matter. So since my employer is self-insured I asked if the Benefits Administrator could order my insurance company to give the pre-authorization. I was told yes.

So I spoke with the Benefits Administrator about the issue. She knew me well, as I have filed and won other appeals. She knows I know my stuff and I’m not asking for anything unnecessary. She said “send me and e-mail”. I sent her the details. And within a few days I had a case manager calling me to set things up with authorization and wanting to make sure I got exactly what I needed. I should have known NOTHING IS THAT EASY.

That was March 2009, fast forward to February 2010, I get a phone call from my garment provider stating my insurance had denied the claim, and all their appeals…even though they had an authorization number.

I was pissed.

I immediately call the insurance company and was told that the claim was processed as out of network and therefore I would owe my out of network deductible. I corrected them and explained the authorization from the Benefits Administrator indicated it had to be processed as in-network. The woman claimed the authorization never specified in-network. WTH, there would be no need for the Benefits Administrator to intervene in the matter if this was a normal out of network claim.

So I e-mail the Benefits Administrator, recap the entire situation. She replies back the next day and cc’d someone from the insurance company. The next day the woman from the insurance company replies and apologizes for the mistake and states the claim will be reprocessed correctly and the provider paid. That was February 2, 2010.

I wait a couple weeks and checked my claims online. No changes. I call the provider; they state they did receive the information but still no payment.

So today, I check my claims online. No changes. I call the provider. No payment.

I fired off yet another e-mail to Benefits Administrator and woman from the insurance company. I remind them that by wearing my compression garments I SAVE them money because the garments have reduced my hospitalizations due to cellulitis.


Wednesday, March 17, 2010


I know my last post joked about the idea of being paid to eat.

But this woman's story is just disturbing...and disgusting.

From someone who has been over 500lbs, I would never WANT to do that to myself.

It's suicide.

Interview: NJ Woman Paid to Gain Weight - From

A New Jersey woman weighs 550 pounds. She does not want to lose weight. In fact, she is gaining weight and getting paid to do so!

Fox 29’s Sharon Crowley interviewed Donna Simpson. She is a 42 year-old mother of two who hails from Old Bridge, NJ.

The Guinness Book of World Records claims she is the heaviest mom to give birth. Now, she posts her pound-packing-progress on her own website.

Her loyal followers pay to see her provocative pictures. They watch her eat. They send her food.

Donna is now going to try and get up to an astounding 1,000 pounds.

Her fans are excited and so is Donna.

Donna’s unique take on this all? “I’m taking it as it goes. I’m accepting myself as is.”

Hello? I'm accepting myself as it is too. And I'm taking the responsibility for my health. It's a battle to stay healthy, but I'm doing it. There is a difference of between being yourself and taking drastic measures to change yourself for the sake of publicity and money. The money issue of this gives me the creeps. I'm all for Google ads, and various ways to make money off a blog. But pictures of her eating, and various other poses for chubby chasers to pay to see and get their kicks....ewwww.

I can see as compared to site where men pay to see big breasted women what's the problem??? I guess where breast enhancement surgery does come with risks, not as many risks as being SUPER MORBIDLY OBESE. And this woman has kids???? How irresponsible as a mother.

My heart goes out to people who are SMO and struggle with their condition, I know how difficult it is to be SMO and to find help in losing weight. It's a tragic condition.

So I have little sympathy for someone who purposely does that to themselves.

Monday, March 15, 2010

Get Paid to Eat!!!

From MumbaiMirror:

Wanted: a pro couch potato who’ll get paid to eat more!

Posted On Tuesday, March 16, 2010 at 04:18:06 AM

London: A company is looking to hire a “professional couch potato” who will be required to do nothing but eat more junk food - and get paid for it.

The firm Proactol Ltd is inviting applications to test their fat binder, which allegedly absorbs up to 30 per cent of fat intake, the Telegraph reported.

Officials are willing to pay £23,750 to a “worker” who will eat 400 extra calories every day in high fat meals such as chips and pizzas during the initial in-house monitoring period to test the fat binding properties of a weight loss product.

“It’s the ultimate work-from-home-job,” the company said. The successful applicant will get to work from home, with supplies being delivered to their door.

The ad reads: “We know it’s incredible, but it’s true. We are willing to pay you £23,750 a year to continue doing EXACTLY what you do every single day, and all we ask is you eat 16 per cent more calories a week - or 400 more calories a day - whilst introducing Proactol to your diet.

“The ideal candidate should not already be on a diet but eat a healthy balance of carbohydrates, fats and proteins and be prepared to increase their existing calorie intake by 16 per cent a week by eating fatty foods such as Chinese takeaways, fish and chips, pizza. Essentially we want you to be yourself. No strings.”

How do I apply??? 400 extra calories a day really isn't that hard to do...this is a bit more amatuer than pro. Let's see I typically eat a balanced diet, with an occasional dining out or home delivered meal. Seriously, I could so do this job. Although the drug sounds a bit too much like Xenical aka Alli...and uh no thanks.

Jessica Simpson's The Price of Beauty

I'm watching the premiere episode of Jessica Simpson's new reality show The Price of Beauty tonight at 10 PM on VH1.
Then I'm moving to Uganda. No fat hut needed.

Sunday, March 14, 2010

I'm not just overweight, I'm under tall.

Yesterday, I set out to find an inexpensive bed frame at IKEA. As I examined the bed in the store I noticed there was a foundation of some time under the matress, not just wooden slats. Since my box spring is still in good shape and the bed slats I was going to buy cost $120, I wanted to find out if I could possibly just use what I already had. I asked a salesman and he said that I could use the box spring I had, no need to purchase slats.

GREAT! That allowed room in the budget for the Expedit bookcase, drawers, and doors I wanted!

So after the adventure of finding our merchandise in the warehouse, loading it into the car (some of it had to be taken out of the box in order to fit), getting it all inside the house, taking down the old bed, manuvering the clutter in my room to work, and putting the metal frame together. My friend puts down box spring then puts the mattress on top.

I burst into laughter. The bed was sooo high! I'm only 5'3".

The matress is pillow top on both sides. I can get one cheek up on it, then wiggle the rest of me up. It feels VERY sturdy. Despite the price, this is heavy metal, and a solid steel midbeam. I feel much better on a box spring which I know can hold up to my weight and motion.

So Big Girl is happy with the bed, Short Girl is getting used to it.

Off topic: I have to give big thanks to my friend who helped me get my bed. The loading, unloading, putting together. I have to say growing up that process would have been filled with yelling and cussing. I remember the first time my old roommate's family came to put her day bed together, I was amazed at how quiet they were. They were even missing pieces and still no one got upset. this how normal people do things? So yesterday instead of cussing and yelling, it was laughter. I think the only time I cursed was saying "oh damn" when I saw how high the bed was.

Saturday, March 13, 2010

In Search of a Big Girl Bed

Let’s start with a moment of silence for the innocent furniture victims whose lives I cut short: 1 recliner, 1 plastic lawn chair (honest only 1), 1 tree house step, 1 wooden dining room chair, 2 couches, 2 box springs, and 1 metal bed frame.

You know how difficult it is to find JUST a box spring??? Probably about as difficult as it is to get information from IKEA.

My current full size bed is 7 years old. My mom bought it for me after I had major surgery. At the time I had given up on bed frames and had my broken box spring and mattress on my floor. When my mom bought my current bed she bought an extra support beam. Thanks Mom!

However, it wouldn’t matter how many support beams were underneath because the beams tip over. Currently, both beams are tipped over so I am only supported by the perimeter frame…and it’s still holding up!!! But, the frame has wheels, and my floors are wooden. It’s the easily shifting frame that causes the beams to fall. I could just be turning over in bed, the wheels move, the beams fall. It’s annoying. Also, I got rid of the brass headboard two moves ago because it never stayed secure to the frame.

In the end, I decided I want/need a new bed. I don’t have a lot of $$$ for this. I want to keep the mattress so I figure just stay with full size for now and in few more years I can upgrade to a queen bed (or king…I think that discussion is still on the table).

So looking around I found IKEA has some inexpensive bed frames. I have bought several chests of drawers, office chair, and other items from IKEA and have been impressed. But a bed? I mean a chest of drawers made out of particle board and foil is one thing…but a bed?

I asked for some opinions. I Googled. Then I did what any smart person would do and I asked IKEA!

I flat out told them what I weighed and asked for the weight limit/capacity of the two beds I was interested in.

This was there reply:

Hello Sarah,

Thank you for taking the time to contact us.

This product does not have a published weight limit. It is a well designed product and will provide good function for which it is designed. The design, weight capacity and function of each product undergoes test to ensure the product will hold up to normal use. If the product is used for something other than the designed function, IKEA is not responsible for loss to personal injury or property.

We do hope that this information has been helpful, and we thank you for your inquiry.

Best Regards,
IKEA Customer Care Center

So can I get the weight capacity at which you test the product??? And what is “normal use”. My mind could twist that in all sorts of directions. But basically I want to know, will the bed hold my fat ass and an occasional slumber party buddy?

Today I’m going to IKEA and jumping on beds. If I get arrested for vandalism, please someone post my bail.

Withing minutes of posting this blog entry IKEA replied to my follow-up e-mail I sent last night asking if I could get the tested weight capacity. I think it's just coincidence.

Hello Sarah,

Thank you for your reply. We are glad to hear from you again.

As the weight in a bed is generally not motionless an exact weight limit cannot be determined. However, for full beds the largest weight that has been placed on these beds is 440 lbs so we would not recommend exceeding that weight.

We do hope that this information has been helpful, and we thank you for your inquiry.

Best Regards,
IKEA Customer Care Center

As the weight in a bed is generally not motionless <---- I'll be have myself. As for the 440lbs...guess that means no slumber party buddy. =(

Wednesday, March 10, 2010

Bringing Sexy-- Baby Got-- Back

I was hit on today. For real.

The story begins for my desire for a cute green dress from Old Navy. This week it’s on sale, and despite their plus size clothing being sold exclusively online (nice how they make that sound special, when it’s really not) the in store misses sizes go up to XXL and I can often fit into certain styles. I decided I wanted to save the $7 shipping fee and go to the store instead of ordering online…2 dresses, 2 shirts, 1 skirt, and 1 necklace later, I think the $7 shipping fee would have been the better deal.

However, it was nice to try things on. When I put on the green dress, it hugged my baby got back just right and I thought “oh that’s going to turn some heads”.

While I’m at the counter the young woman ringing my items commented on my “pretty blue eyes”, I explained I have blue eyes and blue contacts, thank you, yes that blue necklace will look nice on me.

So as I’m leaving this guy holds the door open for me. As we walk into the parking lot he comments on my “pretty blue eyes”. I laugh since I JUST had this conversation…and I wasn’t even wearing blue or a color that typically draws more attention to my eye color.
As a matter of fact, I was in black yoga pants, a gray t-shirt, flip-flops and a pony tail. I had been to the doctor, Starbucks, and was just running errands. No reason to get beautified.

So after my blue eyes with blue contacts because I used to lose my contacts in high school, blah blah blah explanation he asked me if perhaps his eyes would look as blue. I told him it depends, but he should ask his eye doctor for a free sample pair. Then he commented on the weather, somehow I made mention of being from Ohio. He said he was in from New Jersey. Then he said “Can I tell you something, I hope you won’t be offended”. I smile, “go ahead I have very thick skin”. –literally

“There is just something so attractive about a plus size woman who exudes confidence,” he said.
All I could do was smile and say, “I know. If I could bottle it I would.”

He went on to say the internet has brought more awareness to the BBW culture. He asked me if I was on any BBW sites or chats. I politely said I was aware of a few. For my non-fatty friends BBW stands for Big Beautiful Women.

He went on about how great it was that more women are confident with themselves. And he actually pointed out guys who drove or walked by and checked me out. Although I'm not so vain that I think everyone who looks at me is checking me out, some people just look and stare because of my arms.

“See there’s another one, I told you. Go to right up here to the mall and walk by some guy with a skinny hungry girlfriend, he’ll still take a glance at you.”

Yes, I realize this seems a bit creepy…and when the guy mentioned that there are even BBW who frequent the local clothing optional beach I was wondering where the heck he was going with all this. But in the end he was just nice and bestowing a very nice compliment. We probably stood and spoke in the parking lot for five minutes, as I headed to my car he said “well, see you around, you never know maybe next time I’m in town we can have drinks.”

We didn’t exchange names or phone numbers, so that is not likely going to happen.

Monday, March 8, 2010

It's not about how many times you fall....

What matters is that you always get back up!

Last week was a bad week for me. Some long awaited plans that were finally taking shape were suddenly put on hold again. I'm not sure if it was exactly that, or something else but this weekend was bad...pre-op bad. I'm a bit too embarrassed to give the details, but at least I realizes "whoa" what are you doing, and WHY are you doing it??? Was it this one let down that triggered a slip back to VERY bad habits? Why this ONE thing when there were several other highlights in the past two weeks. Despite years of dealing with these issues, things happen. I could dwell on them and continue the cycle of guilt, eat, guilt, eat...or I could pick myself up and get back to what I know is best for me.

Tonight I went to water aerobics, it wasn't even the workout that I wanted. I needed the water. It felt good. It's an hour of not thinking about anything but what the instructions are and listening to some AWESOME music tonight.

Nothing in life is easy, no matter who you are, what you look like, or how much money you have. I have fallen many times, each time I get back up, sometimes it takes longer than others, but what matters is I do it, and honestly when I look back at how many times I've fallen I realize nothing will keep me down for long...I build strength through each experience.

Wednesday, March 3, 2010

My Story in Support of HR 4662: Lymphedema Treatment Bill

I receieved an e-mail this week from the National Lymphedema Network annoucing that legistlation regarding Lymphdema treatment had been introduced in Congress. As I read the e-mail I began to cry, because finally my struggle was being addressed. There were others out there who understood, and better yet there were people in a position of power who were willing to make change happen.

My story:
I was diagnosed with bilateral lower extremity lymphedema in December 2001. From 2002-2004, I received manual lymph therapy and compression wrapping to reduce the swelling of my legs. During this same time I was hospitalized approximately 8 times for cellulitis, had a medi-port placed for IV antibiotics, and had weeks of home health care three different times. The cost of this care was hundreds of thousands of dollars. During most of this time I was covered by Ohio Medicaid. However, my last major infection in September 2004, which was accompanied with a deep vein thrombosis and required two weeks in the hospital, was covered by United Healthcare, which I had through my new employer.

In October 2004, I began three months of manual lymph therapy and compression wrapping. I was limited to 20 sessions of occupational therapy during my plan year. However, January 1st a new year began and I would have a new set of 20 sessions. There was a two week gap. Compression wrapping requires continued wrapping to avoid any set-backs and flare ups. Two weeks without being wrapped would undo the previous 2 1/2 months of progress. And yet, the insurance company refused to authorize the additional visits for the plan year.

After I recovered from the set back from the gap in care, I reached a point where custom fitted compression garments were ordered. Once the compression therapy reduced the size of my legs as much as possible, the compression garments would help maintain the size of my legs by reducing the daily swelling. Because of the odd shape of my legs, the garments had to be custom fitted, so the correct level of compression was provided. The average cost of a full pair of garments is $1000. Typically, garments need replaced every 6 months.

Now compared to the hundreds of thousands of dollars I previously racked up in medical bills, one would think $2000 is a much better deal. Especially given that I would have some responsibility to pay a portion of the $2000 through my co-pay or deductible for Durable Medical Equipment under my insurance plan. In the business sense, garments are a much better option than numerous hospital stays and costly medication for cellulitis.

And yet, every year I have to fight my insurance company to get my compression garments covered.

This bill is very much needed. It's a shame it will take an act of Congress to make the industry understand that prevention of complications is less expensive than treating the complication. I know as a patient, no matter how uncomfortable compression garments are to wear some days, I'd much rather wear my garments than to suffer a case of painful cellultis.

Proof that treatment works!!!

From the NLN e-mail:

"I encourage you to contact your local Representatives and Senators. Urge them to co-sponsor H.R. 4662 and to introduce a similar bill in the Senate. Stress the fact that this bill is projected to save hundreds of millions of dollars every year in avoidance of costs of treating preventable lymphedema-related cellulitis. This is a quality of care issue affecting insured patients and is complementary to healthcare access issues. Time is of the essence for you who have had difficulty in obtaining proper treatment for your LE. We may never have a better opportunity!

You may find your Congressional representatives by going to and entering your address."

Tuesday, March 2, 2010

Surprised, Shamed, Accepted

Last week I received a call from the Social Security Administration (SSA). The woman stated I was due for an annual review. Annual review seemed odd since I had not received any Supplemental Security Income since 2004, and last spoke to someone at SSA in 2005 for what I thought was an over the phone exit interview. She said the computer indicated I was due for a review because I might possibly qualify for Social Security Disability, if I wasn't working and was still disabled.

I'm not working, but I'm trying to find a job. I want to work. I got myself off SSI, Medicaid and food stamps six years ago because I wanted to be a contributing member of society. And after years of living on SSI and credit cards I can't afford to be on SSD.

I am disabled. As much as the smile on my face, and positive outgoing attitude might indicate I'm otherwise, it's not easy for me to work. The best thing for my lymphedema would be to keep my legs elevated at all times. Find me a legal job, without having to move to Nevada, where that is possible. Wearing compression garments allows me to be on my feet or sitting throughout the day, but as the day progresses and the swelling resumes, the garments pinch and start to hurt. But I know others deal with far worse than I do, and I'm lucky to have garments so I don't complain. I go about life the best I can.

So I go in for the review, I explain to the woman that I had called SSA when I got laid off and was told that if I made more than $500 a month they could not help me. In addition, I had a 401k to which I thought I would have to completely drain before I could receive any assistance. She said well it appears you now have enough work credits to get SSD whereas when you first applied in 2000 you did not and could only get SSI. Do you want to apply for SSD?

No, I don't want back on the system. I can't live off SDD for the rest of my life. But I also don't want to tell SSA "no". What if I need them in five years, will a "no review" on my record hinder my ability to receive assistance in the future? I told her I'd rather apply and be told I do not qualify than to refuse the review. Oh, but by the way, my unemployment benefits is more than $500 a month. She said that doesn't matter for SSD.

So she asked if I'm married, have kids, work, address, etc. No request for my current doctor, no request for any of the thick folder of bank statements, ultility bills, or tax documents. She did confirm my disability was morbid obesity and I quickly added "and lymphedema and lipedema". Sadly, my SSI was given to me simply because I was fat. How embarrassing, true my weight at over 500lbs prevented me from being able to work but embarrassing to have to admit. So a few more taps on the keyboard and she says, "o.k. everything is good to go, you'll get a check in 4-6 weeks".

What? That's it. I know people fight for years to get SSD and I just got coverted from SSI to SSD in all of 15 minutes.

Surprised: I couldn't believe it was that simple. Someone is watching over me, had I not been called in for a review I would have never thought I could get any type of help. I had asked and was told otherwise based on my previous status.

Shamed: While the assistance is needed and is a relief that I'll be able to live and pay my bills while looking for work, and I could possibly get Medicare (I *heart* government healthcare) in the future, I have a feeling of shame. I had worked so hard to better my overall condition through improved health and education to get OFF the system, and here I am back ON. I don't want to be like my cousin who boasted to my mom about "finally getting SSD, so he'll never have to work again". He even claimed to have "the same thing Sarah's got wrong with her legs"...the loathing I feel towards him....I started to feel towards myself for slipping back on assistance.

Accepted: I am disabled. I'm not working. The point of SSD is to provide assistance to the disabled. I paid into the system, and now it is helping me when I need it. It's not forever. When I find a job the benefits will stop, as they did before. There is no shame in needing help. I will not resign to living on the system, what I did before I can do again. Only this time it will be a bit easier, I already have my education and my health is improved since 2000.

Thursday, February 25, 2010

The WLS Pick-up Line

I was hit on today. No, not like that.

A woman tried to recruit me to have "the surgery". Little did she know I had already spotted her as a post-op so I totally knew where her pick-up lines were leading.

It started when the supervisor who was giving me a tour of the hospital asked her how she was doing, she replied “Good, the doctor took me off one medicine and put me on five. I’m vitamin deficient and xyz med was irritating my stomach.”

The vitamin deficient totally made me look at her hair…which wasn’t that thin but still thin enough to make me wonder.

So while I was observing the guy next to her, she complimented me on my sweater. I thanked her and explained it was more comfortable than a suit jacket on my arms. She then said she loved her sweater and couldn’t get rid of it despite it coming from the Avenue and being too big “on her now”. For any of my non-fattie readers, the Avenue is a plus-size clothing store. So that was her hint that she was a former fattie. So then she says, “I was really big, and it was hard for me to do my job. So I had ‘the surgery”. Here again, code word although even non-fatties typically know “the surgery” refers to weight loss surgery just as “the pill” refers to birth control. Then she got out her before pictures to show me how wonderful she has done.

As this point I’m quite sure she is trying the polite approach to recruit me, so I tell her that I too had “the surgery” seven years ago then gave her the spiel of how I was over 500lbs, I have lymphdema and lipedema which is partly why I’m so fat….blah blah blah…I’ll bring the picture later.

After lunch I felt I couldn’t take my bottle of Diet Sunkist back with me because I’d be judged, and I wasn’t sure of the drinks policy in the work area.

I showed her my “before picture” but honestly it’s like saying ‘you think I’m FAT now…omg I used to be HUGE’. Why must I explain my size to people? Well in this case I did so she’d turn off the recruitment script.

Oh, and then of course in reply I put asked her if she was a member of ObesityHelp. She said no….bawahaha the recruiter is going to become the recruited. I’m taking the pamphlet with me next week!

Wednesday, February 17, 2010

The bigger the better!

I love the Olympics, and figure skating is my favorite of the Winter Games! So when I saw this article today I was overjoyed...for her and for the message it sends to women.

Ice dancer Belbin has put on weight, and she couldn't be happier.

Monday, February 8, 2010

Fatty Fatty 2x4


If a serving of cereal is 150 cals for 3/4 cup then a kid who eats 2 servings will be eating...

=300 calories

1 cup = 200 cals
2 cups = 400 cals

And I did all that math in my head...yes, my shoes are off but its Florida and I wear flip-flops a lot...I promise I didn't need a calculator or my appendages to figure out that math.

So explain why the FDA thinks regulating serving sizes is going to change the way people eat. It's simple math people. So what now we're going to have a generation of obese and stupid kids???

One Bowl = 2 Servings F.D.A May Fix That

The information is there, on the box...and actually some smaller potato chip bags give per serving and entire bag nutritional facts. I'll admit that has NEVER stopped me from eating the entire bag. I mean if I'm to the point of grabbing a snack size bag of Funyuns I'm obviously stressed and usually thankful that the entire bag is less than 400 calories.

I for one can and do eat a serving of cereal; I actually eat less than a serving of some cereal. I have cute little cereal bowls and I put a lot of strawberries on top. I actually feel like it's a huge Saturday morning bowl of cereal because of how the milk makes the berries almost over flow the edge. Total cereal: 1/2 cup

I will admit I don't like reading a label and it stating a serving in oz and not a number. For instance don't tell me a serving of cheese is 1 oz., give me 1/4 cup or how many cubes. And most packages I find that information in the nutritional fact area.

This whole idea reminds me of the idea to make Tylenol by prescription because people are taking too much. Or the FDA wants to reduce the milligrams of the over-the-counter version. Hello, people are just going to take more, lowering the dose isn't going to help the fact people like to pop pills for any reason and if they don't get relief in five minutes they will pop more.

People who are too lazy to read nutritional labels now and figure out the damage of eating a triple serving aren't going to read the new label that does the math for them.

Saturday, February 6, 2010

Was it all just a dream?

More like a nightmare.

Yesterday in all of a 140 character Tweet I was told I most likely do not have lymphedema or lipedema, because both are “very rare” and are accompanied with other birth defects. I was told this by an obesity doctor.

Tweet: ppll believe that #genes are responsible for obesity. For the most part, #obesity genes come w on/off switches in response to bodys milieu

My Reply: I'm in the least part, my #obesity is from my #genes...#lipedema and #lymphedema @born2lbfat

Tweetback: probably not Sarah. those syndromes are very rare & present in early childhood, often accompanied by other birth defects.

My reply: Oh, I wish that were true...but I do have both, I'm a rare being. =) Pic of legs @born2lbfat

Tweetback: If that's so, hopefully your doctor is helping. I wish you well in your journey to health.

Then later: There are very few real obesity genes. The shape of your body & how fat distributes is genetic. Most other #obesity...

And again: Real #obesity #genes are present from birth, often accompanied by other birth defects.

And again: We have evolved into believing that cultural &familial #obesity is "#genetic". It isn't. The good news is, it can be healed.

What upsets me the most is this is coming from someone who makes a living “helping” obese patients. I’m not going to name names and call people out, I won’t tell someone they are wrong as quickly as I was. I was simply sharing my experience. From what I read, her MD is in Psychiatry. Her rational makes sense and I’m sure it applies to and helps many people. It’s true, not everyone is fat for the same reasons.

However, it’s bad enough that most doctors are not educated on lymphedema. So to have a doctor who touts themselves as an obesity doctor to not acknowledge the possibility of lymphedema contributing to obesity is just bothersome. At least in the combination of treatment the obese patient with lymphedema will need compression therapy for the affected limbs. Lipedema is rarer, so I am a bit more forgiving. But a quick heads up to ALL medical professionals when I person walks (if they can even walk) into your office with legs that look like this…something isn’t right.

You know for years I was told all my problems were just because I was fat and if I would just eat less I’d lose weight. Even when my legs were filling with fluid and in stages of elephantitis, I was told it was just my weight. When I was FINALLY diagnosed with lymphedema I had hope that with treatment I would one day be “normal”. I began aggressive compression treatment; I was tethered to a compression pump for 6-8 hours a day. My legs were compression wrapped in layers of foam, and bandages from my toes to my groin three days a week. I went to class and to work wrapped up like a mummy, because I had a desire to live a productive life no matter how much discomfort and pain I had to endure. I had gastric bypass surgery, because being closer to a normal weight is part of treating lymphedema, and I was aware that not ALL my weight came from lymph fluid, my poor eating habits did play a role.

About a year after surgery I moved to Miami and saw a lymph specialist. He asked me if my surgeon told me surgery would only help me lose weight above the waist. I replied “of course not”. So then he told me that I didn’t have primary lymphedema as previously diagnosed, I had primary lipedema with secondary lymphedema.

Woohoo, lucky me!!!

As I searched the internet for information (which btw I have NEVER read of lymphedema or lipedema being accompanied by other birth defects) I felt a bit of relief…the fat is not my fault, all my life I never ‘felt’ fat and this is answer, it’s not my fault. Then came the realization, if the fat is not my fault, then there isn’t much I can do to get rid of it either. There is no way to know what fat is from my poor eating habits, and which fat is from lipedema. I’ve made major changes to my eating habits, exercise more and am still fat and will be for life.

I don’t use lipedema as an excuse to just be fat. I want to be healthy, I want to lose more weight, and I work towards that every day. I have lost over 150lbs; I no longer have sleep apnea, or high blood pressure. I’ve never had diabetes. I am the “healthy” fat person…if you don’t count the DVT, TIA, and PFO (omg could that be my other birth defect?)

I agree I am a rare case. And there are many people who resign to thinking their obesity is genetic and they have no control over it. I do not agree, I DO have control over my life, I can control my health within reason, I have control over my weight, if I did not have control I would be over 500lbs again. However, with the lipedema I do not have limited control, and knowing that challenges me to do the most I can to “beat this” with the realization that I will never weigh 120lbs as the insurance charts state as my “normal” weight.

Not normal, but much better.

So as much as I wish the past 10 years of my life were not true, that I did not have lipedema and lymphedema: that the numerous doctors, physical and occupational therapists in two states were wrong about my life sentence of care, treatment, and maintenance of these conditions; that I didn’t endure years of compression therapy, nights of waking up in pain from wraps that slipped and became too tight, hospitalization for painful cellulitis, arguments with insurance companies to get the care I needed in order maintain my conditions.

If only a simple 140 character Tweet could erase all that…but only in my dreams.

Monday, February 1, 2010

Me on Oprah

While I was home last weekend someone asked me about being on Oprah. Honestly, I was surprised because it was so long ago and I wasn't technically "on" Oprah, a video segment of me was shown on Oprah. I never went to Chicago or met Oprah. I had e-mailed the show in response to seeing Stacey Halprin. The first time I saw her on the show was during my senior year in college. I'm quite certain I was skipping class to watch TV in my dorm room and I saw Stacey speaking of how her weight embarassed her and kept her from doing things in life and I actually started to write Oprah a letter that day saying the biggest problem I have with my weight is that it wasn't a problem. It didn't bother me enough to want to change it, while I didn't let my weight keep me from doing things in life it soon caught up with me. After I saw the follow-up segment on Stacey's weight lose surgery I wrote an e-mail to show to tell how Stacey had long been an inspiration to me. To my surprise the show called me months later when they were planning another follow-up show with Stacey.

One of the first segments I saw.

This is the segment to which I replied.

This was my segment, I have the video on VHS maybe I should look into getting it digital.