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.

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.

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?

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?

Seven

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.

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 ObesityHelp.com. 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.

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.

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.

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.

Disturbing.

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 MyFoxPhilly.com


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.

Jessica Simpson's The Price of Beauty

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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.

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.

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. =(

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.