Born2lbfat

My life with Lipedema & Lymphedema...destined to be fat.

In Search of a Big Girl Bed

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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.

UPDATE
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. =(

Bringing Sexy– Baby Got– Back

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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.

It’s not about how many times you fall….

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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.

Lymphedema Treatment Bill

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I received an e-mail this week from the National Lymphedema Network announcing that legislation 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 http://www.contactingthecongress.org and entering your address.”

The WLS Pick-up Line

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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!

Fatty Fatty 2×4

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2×4=8

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.

Was it all just a dream?

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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… http://bit.ly/cz9if9

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.

Me on Oprah

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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.

http://www.oprah.com/health/Follow-Up-with-Stacey/slide_number/6#slide

It’s not the FAT, it’s YOU.

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It amazes me that people get so upset when their doctors tell them “it’s just your weight” instead of actually diagnosing the problem, yet, they don’t seem to think past blaming all their issues in life on their weight.

They seem to think they must lose weight in order to get a better job, find a boyfriend, enjoy a vacation, be a good mother, etc. Hello, stop and think a minute. I know many skinny or normal sized people who hate their jobs, are single, don’t go on vacation, and suck as parents. It’s the not the FAT people, it’s YOU.

All I need to remind myself of this is a shopping trip with my best friend. Finding clothes that fit and look nice is always an issue for us big girls out there, but my best friend is so lucky to be a normal size and can shop in regular stores and wear whatever she likes….right?

WRONG!

On a recent trip to find jeans she tried on nearly 10 different styles…and did successfully find 1 pair that “fit”. How could this be? She’s not fat…why can’t she find jeans that fit. Ah because it’s not the size that matters, it’s not the jeans, it’s YOU not wanting to take the time to find that right style that fits and flatters your body. It’s easier to just give up and settle for ill fitting jeans or just wear stretch pants…and blame being too fat for not finding good jeans.

I’ll be revisiting this topic…the reason it popped in my mind today is because I saw my PCP this morning about recent weight gain. My doctor is an angel, I knew I could actually talk with her about my concerns and wouldn’t just be told to eat less and exercise more. Of course, part of the conversation was that I have been excercising more and my eating habits have not drastically changed from a time when I was maintaining my weight. It’s frustrating. But my concern isn’t neccesarily getting fatter, it’s that there is something wrong. So despite my hesitation to dive back into the medical tests and surgeon appointments, that is what is needed.

I’m reminded of when my weight first concerned me and my hometown doctor told me yep, you’re fat that’s all your problem is…despite my legs looking like this…ah yeah that’s fluid but it’s there because of you weight. Guess what is was there because of lymphedema which needed treated…despite my weight…sure losing weight will help the treatment but losing weight was not the simple answer.

Just my weight? Not so much.
So stop blaming your weight for all your problems in life and also don’t think being skinny will resolve all your issues. You’ll just be smaller with the same issues.