Dealing with the fear - Yours, and Other People's

[more2adore]

So I've been doing pretty well keeping my fear about surgery quashed, but we just told my in-laws and my parents last Sunday about how we're pursuing this surgery. Both my husband and I have been anti-surgery for a very long time, so to say they were shocked is an understatement, and both sets of parents are very scared for me. And now, as a result, I'm feeling a bit scared again. I've seen some people on OH say they'd rather die than stay this size. That is NOT the case for me. I am mostly happy in my life, and I definitely do not have a death wish! I just want to stop feeling so trapped by my own body. I'm in my mid-thirties, and I want to get out there and experience the world before other factors like age step in to make it more difficult. (Not to mention my desire to have kids... something I can't see happening easily at this size and given my age).

The in-laws said there must be a reason insurance companies often won't cover this procedure without a fight. They did a bit of uninformed Googling (dangerous, I know) and have discovered lots of places where DS risks are listed as much higher than others. I've pointed out to them that the risks are NOT higher when you take into account an experienced surgeon, and that we will be making sure my surgery is done by the best in the country. I've also pointed out that there is little point in having a surgery that won't work for me, and none of the others are going to result in enough sustained weight loss to make a serious difference in the quality of my life. I've also mentioned that I have NEVER had issues taking medication as prescribed (every day of my life since I was a small child) and getting bloodwork done regularly (I had it done every three months for a couple of years after I was diagnosed with hypothyroidism, and every six months after that).

I've known plenty of people who had other surgeries (mainly the RNY) and passed away from various complications either during or even years after. The one person I knew in real life who had the DS died of malnutrition. Her husband insists she was taking her vitamins, but who knows - I'd imagine she perhaps didn't have doctors who knew how often she needed to have her blood tested, or how much supplementation she actually needed. I am going to be ridiculously diligent about all of that.

That said, I KNOW I'm at much higher risk because of my size. I'm hoping my risk is somewhat lessened because of my age, but still. I'm genuinely scared. I don't want to die. Am I going to die? I would rather have another five to ten miserable years in this body than do something I have little chance of surviving, and I don't know what my chances really are.

(I completely realize I'm being ridiculous right now, but I imagine many people probably have this moment at least once pre-surgery. Help?)

 

[Sheanie]

Well, Captain Obvious here. This message is too little, too late, but...... I did not tell anyone except my husband and our 3 children about my DS plans. Wasn't anyone's business, I didn't need or want their opinions or comments, and they certainly weren't going to change my mind. So telling them was (in my case) not an option. I also have two RN sisters who are obese and totally against surgery for weight loss. One believes in prayer to fix all ailments. The other is Special in her own way, and we do not talk. My father had just died during my pre-op diet, and my mother certainly didn't need to know.

I've learned in life that telling people everything isn't always in my best interests. Sometimes keeping a secret to myself is a gift to ME. Protect yourself from negativity as you prepare for this surgery. Come to these forums to prepare, read and learn.

As you drop the weight, interesting things happen to friendships and family.

 

[Elizabeth N.]

Do you know how to read statistics? The death rate with the DS, overall, while a little higher than the other WLS procedures, is still very, very low. Betting odds in ANY case.

You have a less than 5% chance of losing a meaningful amount of weight and keeping it off for just ONE year. You have a MUCH LESS than 5% chance of dying from the DS. Which odds do you want to live with?

I was looking death in the face from being SSMO, oxygen dependent, almost chair bound....And I was a very few years older than you are. Trust me, it's a HORRIFIC way to go.

 

[Elizabeth N.]

Another thought: Dealing with other people's fear is Not. Your. Problem. Their fear is THEIRS. You are not responsible for fixing it. You need only deal with how you *respond* to it within yourself.

 

[Munchkin]

Here's what I believe to be the truth. This is how I rationalized this whole experience.

You know my story. There came a point where I knew there was a very ugly future coming up if I did not do something drastic about my weight. My future was one of even more limitations. Probably diabetic with blown out knees. Taking prescription meds by the handful. I was tired of living life on the sidelines, limited by my size and poundage. I finally had to admit the fact I knew there was no magic diet that would take care of the problem. Yes, the day came when I had to admit to myself I was more afraid to live the rest of my life SMO than I was to have the surgery. And I did what I had to do.

I was never a proponent of the fat acceptance movement. Couldn't quite get my arms around the fat and healthy thing, or embrace fat as beautiful. I got naked and looked in the mirror...and I wanted to hurl. I thought I was a grotesque caricature of a human being. I tried but it wasn't for me. I have a friend who bought into it big time. Today she is 50, has to use a walker because her knees are blown out and she is too heavy for replacements. She also has had a heart attack and has chronic congestive heart failure. She lives on a small disability pension because she can't work. I believe she weighs around 500lbs. On meds for everything under the sun. She insists her diet is healthy and believes all these terrible things would have happened to her at any weight. She thinks WLS is wrong. Well, she has chosen her path and made her decision. I hope it's not too late for her when she finally changes her mind. All day she is on FB, posting pictures of her doing all the things she can no longer do. And mourning her lack of a love life. She is one of those folks who say, " If I was meant to fly, God would have given me wings.".

One of the hardest fears to face is the fear of change.

Postop I learned for myself how small my world had become. Oh the freedom of going anywhere and doing whatever I wanted to do without having to think and plan ahead for options just in case I didn't fit. Being able to pick out clothes from any store in the mall. Pretty clothes in colors other than black. Being able to stand and even run all day without even thinking about it. I kayaked the Amazon, went diving in Tahiti, rappelled down cliffs into cenotes, and rode a horse across Mexico. All these things were great fun but the most amazing thing to me was how differently I am treated by the world as a normal sized person. I am no longer on the outside looking in. I fit in! And yes, at times this made me very angry but I had to make my peace with the world and admit I can't change it. But I can and did change me.

You are about to give yourself a great gift. And great rewards always come with great risks.

 

[more2adore]

Thanks, guys. You have really helped. EN, I had the risk rates saved for the DS on my computer, but we unfortunately had issues with my computer last week and they're gone now. I'll have to see if I can find them again. Much less than 5% risk of death makes me feel much better.

 

[bearmom]

My family was the same. I knew they would be, so I didn't even tell them until right before I left the country for my surgery. Maybe not the kindest of me, but I knew there were be all the hand wringing and repeating lots of unfounded hearsay and every wives-tale they'd ever heard, so I knew I had to do it that way. It helped afterward when they were frantically going through all the "what ifs" that if they wanted to really discuss it with me, they needed to read real information that I happily steered them to if they were interested, and only then did I want to discuss it. That helped a lot. Then, watching my health improve after the surgery and continue to be awesome for the next 6+ years pretty much sealed the deal. Every one I know that was against it, now sings the praises of my surgery.

Another thing, that while I love the studies and dredging up all the articles available, some of the data that showed the DS having more complications was from a study where the DS was done on the heaviest and therefor sickest patients, so of course they had more issues. Pick a good surgeon with a good record, and you will be fine.

 

[more2adore]

Well, Captain Obvious here. This message is too little, too late, but...... I did not tell anyone except my husband and our 3 children about my DS plans. Wasn't anyone's business, I didn't need or want their opinions or comments, and they certainly weren't going to change my mind. So telling them was (in my case) not an option. I also have two RN sisters who are obese and totally against surgery for weight loss. One believes in prayer to fix all ailments. The other is Special in her own way, and we do not talk. My father had just died during my pre-op diet, and my mother certainly didn't need to know.

I've learned in life that telling people everything isn't always in my best interests. Sometimes keeping a secret to myself is a gift to ME. Protect yourself from negativity as you prepare for this surgery. Come to these forums to prepare, read and learn.

As you drop the weight, interesting things happen to friendships and family.

Yeah, I'm still trying to decide who exactly I DO want to tell. But in-laws and my mom were mandatory. It just isn't something I would be comfortable keeping from them. My mother-in-law did message me just now to say they're behind me 250% percent (100% for each of them, and 50% for the dog, heh). They really do care, which is the reason we chose to tell them. They just worry, but now that I think they have a better understanding, it's probably helping.

I speak only for myself when I say I absolutely had more than one moment of "OMG, what am I doing this for? I could DIE!!!!!!" etc etc. Well, yes, its true I could have died. But I could also die every time I pull my car out of the driveway, too, yet I don't have an existential crisis over THAT every day. Basically, @more2adore , that second guessing thing is totally expected, rational, even. Its a big decision. Playing devil's advocate is just one technique the mind uses to ensure its making a solid decision that's in your own best interest. But at the end of the day you can't let fear determine everything or you can never move forward.

I have been reading your posts since you joined -- you are a very smart woman. You are already experienced with the discipline needed for daily pill-taking and the understanding of why regular blood work is crucial. You will make the right decision for YOU; trust yourself to do that. Its your decision, not theirs. While their reaction is surely coming from a place of deep caring about you, only you can make the real decision what to do here. And I know you will make the right one for yourself.

p.s., again, Captain obvious here, but all of us came through surgery fine. Fatalities during the DS surgery are pretty slim. Nothing we do is risk-free, including continuing to live SMO. Just saying'.

Thank you so much. I feel better knowing this is a normal part of the process - I suspected that it was.

Another thought: Dealing with other people's fear is Not. Your. Problem. Their fear is THEIRS. You are not responsible for fixing it. You need only deal with how you *respond* to it within yourself.

Totally true, EN. Totally true.

Here's what I believe to be the truth. This is how I rationalized this whole experience.

You know my story. There came a point where I knew there was a very ugly future coming up if I did not do something drastic about my weight. My future was one of even more limitations. Probably diabetic with blown out knees. Taking prescription meds by the handful. I was tired of living life on the sidelines, limited by my size and poundage. I finally had to admit the fact I knew there was no magic diet that would take care of the problem. Yes, the day came when I had to admit to myself I was more afraid to live the rest of my life SMO than I was to have the surgery. And I did what I had to do.

I was never a proponent of the fat acceptance movement. Couldn't quite get my arms around the fat and healthy thing, or embrace fat as beautiful. I got naked and looked in the mirror...and I wanted to hurl. I thought I was a grotesque caricature of a human being. I tried but it wasn't for me. I have a friend who bought into it big time. Today she is 50, has to use a walker because her knees are blown out and she is too heavy for replacements. She also has had a heart attack and has chronic congestive heart failure. She lives on a small disability pension because she can't work. I believe she weighs around 500lbs. On meds for everything under the sun. She insists her diet is healthy and believes all these terrible things would have happened to her at any weight. She thinks WLS is wrong. Well, she has chosen her path and made her decision. I hope it's not too late for her when she finally changes her mind. All day she is on FB, posting pictures of her doing all the things she can no longer do. And mourning her lack of a love life. She is one of those folks who say, " If I was meant to fly, God would have given me wings.".

One of the hardest fears to face is the fear of change.

Postop I learned for myself how small my world had become. Oh the freedom of going anywhere and doing whatever I wanted to do without having to think and plan ahead for options just in case I didn't fit. Being able to pick out clothes from any store in the mall. Pretty clothes in colors other than black. Being able to stand and even run all day without even thinking about it. I kayaked the Amazon, went diving in Tahiti, rappelled down cliffs into cenotes, and rode a horse across Mexico. All these things were great fun but the most amazing thing to me was how differently I am treated by the world as a normal sized person. I am no longer on the outside looking in. I fit in! And yes, at times this made me very angry but I had to make my peace with the world and admit I can't change it. But I can and did change me.

You are about to give yourself a great gift. And great rewards always come with great risks.

So eloquent, and so on point. I had a different experience with the fat acceptance movement. I embraced (and still embrace) who I am at any size. My self-image and self-esteem are actually pretty healthy. What I've decided I can no longer embrace is the limitations imposed by my size, the health complications I have, and (if I'm honest with myself) the ones I'm likely to see in the future if I sit by and do nothing. I feel as though the world is passing me by, and I've already allowed that for far too long. I just decided one day that I could sit here and let things get worse and worse, or I could stand up and fight. I am going to fight, and fight hard. I want to experience the kind of freedom you talked about. I deserve that kind of freedom.

 

[more2adore]

My family was the same. I knew they would be, so I didn't even tell them until right before I left the country for my surgery. Maybe not the kindest of me, but I knew there were be all the hand wringing and repeating lots of unfounded hearsay and every wives-tale they'd ever heard, so I knew I had to do it that way. It helped afterward when they were frantically going through all the "what ifs" that if they wanted to really discuss it with me, they needed to read real information that I happily steered them to if they were interested, and only then did I want to discuss it. That helped a lot. Then, watching my health improve after the surgery and continue to be awesome for the next 6+ years pretty much sealed the deal. Every one I know that was against it, now sings the praises of my surgery.

Another thing, that while I love the studies and dredging up all the articles available, some of the data that showed the DS having more complications was from a study where the DS was done on the heaviest and therefor sickest patients, so of course they had more issues. Pick a good surgeon with a good record, and you will be fine.

See, this is the part that had me worried. Complications are worse with the "heaviest and therefore sickest" patients. I am definitely among the heaviest - maybe THE heaviest Dr. Nottle has ever worked on, though I won't know that until I meet with him and ask him. I'm not sure if I'm one of "the sickest" though. I don't have high blood pressure or high cholesterol or diabetes, fortunately.

 

[Spiky Bugger]

I forwarded calls to my cell. I spoke to my mom the day before surgery. Not the day of. The day after, she called and when I answered she said I sounded like hell. I was able to tell her that I had just had my lap band removed and "some other stuff done" and I was on drugs.

Fat acceptance? Nope. Morbid obesity kills people. The definition of morbid includes the word "disease." I don't know why people gather together to convince each other that it is somehow okay to be on a fast track to disability and early death. It just isn't okay. Weight is not an issue independent of health.

 

[bearmom]

Heaviest, well, that's more of a test for him. THAT's why it's so important to get a good surgeon. Sickest, well, that can add a bazillion things that make recovery and healing tough. I was "only" 325 ish pounds, but had breathing issues, which meant I needed more attention while I was under, and also caused several emergencies post op.

When you get to talk to Dr Nottle, he will give you a better idea of risks and if there are possible ways to alleviate them. For instance, I was told to drastically reduce carbs the days before surgery to shrink my oversized fatty liver, so he could maneuver around it more easily (it was laproscopic surgery, which I suppose is great, but open surgery has some pluses). I was also told to practice square breathing due to my asthma, sleep apnea and reduced lung capacity.

 

[DianaCox]

The highest risk of death is in the OLDEST, heaviest, sickest patients - and men. You really have only one of those risk factors.

 

[more2adore]

I forwarded calls to my cell. I spoke to my mom the day before surgery. Not the day of. The day after, she called and when I answered she said I sounded like hell. I was able to tell her that I had just had my lap band removed and "some other stuff done" and I was on drugs.

Fat acceptance? Nope. Morbid obesity kills people. The definition of morbid includes the word "disease." I don't know why people gather together to convince each other that it is somehow okay to be on a fast track to disability and early death. It just isn't okay. Weight is not an issue independent of health.

I understand that, and I don't think you can really continue to be healthy at ANY size, but HAES is an offshoot, and not the entire premise of, the fat acceptance movement. I do agree with the premise that you can't tell someone's health just by looking at them, and I also believe there is a LOT of discrimination and unnecessary hatred against fat people these days, which should be changed. Those aspects of fat acceptance I agree with. I have lost out on jobs and housing and received subpar healthcare on multiple occasions because of the prejudice of a physician. (I was diagnosed years too late to stop the progression of my lymphedema because she kept insisting I just had fat legs, even though I told her I was sure there was something more going on).

Unfortunately I don't think the fat acceptance movement is really advocating for all these things in the best way possible. Insisting on including "health at every size" is taking away from the most important messages, IMO. I DO think it is possible to be healthy at 425 pounds - at least for a while (I was). The question is - can you STAY that weight for years and years and STILL stay healthy ,and I don't believe the answer to that is yes. I think you can be healthy at MANY sizes (including the "overweight" BMI category - I'm sure you are aware of the study that came out that says the people who live the longest are those who fall into "overweight" but not "obese."). But SSMO? Yeah, I don't think so, not long-term.

 

[jillc]

@more2adore, I totally understand about the fear of others. I am divorced. I work remotely and only am home a maximum of 1 week out of every 4 usually 1 out of 5 or 6. My parents are elderly. They also spend 6 months of the year (the winter) in Palm Springs, CA and the other half in Alberta.
So it only made sense to move all my things into storage and move in with them. This way I look in on their house occasionally when they are gone, and see them when they aren't.

But, it has created some boundary issues and they are getting older. Plus, 6 years ago my only sibling (who was not obese in any way) died of complications of atrial fib.

My Mom is a retired RN, so that has helped. But she wants to be there, and it would be good to have support. When I was considering Brazil, the guilt trips were huge. She's rational, she knew that I made sure the standard of care was good. But me going so far away? She really really didn't want that - she's a control freak, a retired director of nursing, and general PIA, but I love her to bits.

I wanted to vacillate and disregard Brazil, at the time I felt it was my best choice. So, I told her that I would go where it was best for me.

The worry about dying though? A big deal. If I die, I know it would kill my parents. The death of my brother almost killed my mother. They are scared, but they understand I will die early or kill myself slowly in the future with adipose tissues. But it took a lot of talking and sending of articles to get them here.

Guilt is a very strong commodity though. Especially since it was the method my parent's disciplined me with.

As for the fat acceptance movement? I accept myself, most of the time. I'm not disgusted by my body, but I would love to dress in normal clothes and not be limited by my weight. What I do accept is 'healthy is the new skinny'. Being underweight is unhealthy sometimes, and IMO should not be glamorized to the extent it has been. When I look at the Q-tip arms of some celebrity woman, I shake my head at the concept of "Celebrity A" being the ideal weight. It's insane! Being a few pounds overweight is not the sin that society makes it. At this point, I would be quite happy to be 20 lbs overweight. But society does not accept that, and I think it should.

 

[Elizabeth N.]

See, this is the part that had me worried. Complications are worse with the "heaviest and therefore sickest" patients. I am definitely among the heaviest - maybe THE heaviest Dr. Nottle has ever worked on, though I won't know that until I meet with him and ask him. I'm not sure if I'm one of "the sickest" though. I don't have high blood pressure or high cholesterol or diabetes, fortunately.

Here's what I said about myself: Okay, so you run a slightly higher risk of complications (for me it was a MUCH higher risk). So what? That's better than guaranteed slow and horrific death from the diseases associated with weighing (at the time I started toward surgery) 400 pounds.

I was both among the heaviest AND the sickest.