Born2lbfat

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

Déjà vu

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dejavu

It happened again. On the way home from the gym I stop at the grocery and someone makes a rude comment. Last time it was a woman in an electric cart laughing at my “cankles”. Yes, I have cankles, and thankfully these cankles are able to walk my nearly 400lbs body around the store and I do not need the assistance of a cart. For the record I have never used an electric cart, not that I never “needed” one, but they scare me and I’d either not go shopping or I’d endure the walk and rest myself against a normal shopping cart.

This time I didn’t hear the comments, my boyfriend heard and saw the giggles. He was far more bothered by it than I am. He was actually so bothered than he was unusually quiet during dinner. I even asked “what are you thinking about?” and he declined to say. On the way home he finally came clean. It seems the three tweens who were standing in the checkout lane and quickly excused themselves as got in line, huddled in the next lane and giggled about “her”.

It happens more times than I care to admit. I’ve been asked how am I so strong to not let that bother me. Well, of course it bothers me. Every time I get a stare or hear a giggle it stings, but only for second. After that initial sting, I remember that these people don’t know me. They don’t know what disease I have, how hard I work to fight it, or how much I’ve overcome in life.

Maybe I should tell them? Nah, I will save my energy for my priorities in life and just blog about it here.

I will say I hope those young ladies grow up to have as much self-confidence and strength that I have to deal with life’s challenges.

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.”

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.