Monday, July 16, 2012

I don't have a clue what to title this.

I've been debating on uploading this post for a long time... But in the end, it comes down to being honest. This is what I'm going through. I don't want to seem negative or whiny. I just need to vent. and for people who come here for informational purposes, I share my story because I wanted to know what it would be like for me, before I got myself into it... there was absolutely nothing online from the patients perspective.. and so I created this website, hoping to help others.. I've gotten messages from other teenagers thanking me for this blog, and what not.. so I'm not going to mislead anyone by only telling the positive things. So I'm going to continue this post. ---

I've been slacking on updates here, for numerous reasons..

1. I've gained weight. I'm confused. I'm not happy. I'm hormonal 90% of the time. I don't want to say something I'll regret saying later.

2. I haven't had the motivation. I get lots of ideas for posts, but I just never follow through.

3. I've been going to my mom's a lot more lately, and her Internet connection is ridiculously slow.

4. I'm waiting on information back from a few different doctors on why I'm having so many issues.

5. I'm trying desperately to enjoy my summer, because I didn't get to the past 2 years. And blogging on here makes it hard, because it reminds me of the negative stuff in my life right now.. Which I'm trying to spend the least amount of time possible, focusing on.

----------------------

So that's where I'm at. Let me elaborate...

At my appointment in May with my bariatric team, I was down to 197lbs. And I was super excited. I had broken the 200 mark. a huge goal for me. I was eating in between 600 & 800 calories a day. Exercising about an hour a day, getting 60+fl oz of sugar free fluids a day. and doing great.

I emailed my dietitian asking her how many calories I was supposed to be getting in a day, at 10 months out. Because I wasn't losing as quickly as they said I should be. so I wondered if maybe i wasn't eating enough, because I had that problem before. She said in between 1,000 & 1,200. So, I attempted to up my calories. I'm still barely averaging 1,000. It's hard! I have to remind myself to eat.. but I try to get enough in.

WELL. My endocrinologist upped my Metformin, from 500 2x a day to 850 2x a day, because my insulin levels were still really high. Then after about a week of that, I was having serious nausea.. and couldn't get ahold of anyone for whatever reason. So I just quit taking it. Stupid decision, I know. very stupid. Whether it was due to the metformin, or if it was just a stomach bug, i don't know. But it stopped after i quit taking it.

And that same week, I ran out of the birth control I was on (which wasn't strong enough anyway, breakthrough bleeding.) so I was off that too, no refills.

What some people don't understand is, i see SO many doctors. I have my endocrinologist, I have the nurse practitioner & dietitian tied in with the bariatric surgery, then I have my family doctor. And they don't communicate. Everyone has different ideas on what should be happening on me, and different confusion on why their expectations aren't happening. So I'm in the middle of it all, and it's extremely frustrating. I don't know who to listen to or what to do.

Sure enough, I gained 10 pounds. In literally 3 weeks.

the people tied in with bariatric surgery seem to think i don't even really need the metformin, or that i wont for very long.. BUT LOOK WHAT HAPPENS WHEN I'M OFF OF IT.

Ugh...

So after lots of blood work was done by my endocrinologist, and it was determined that all of my blood work isn't any different than it was before, she thought maybe we just titrated too fast or something... and put me on 250 2x a day of metformin.. then 2 weeks later back on 500 2x a day.. and ordered in a new prescription for a stronger birth control.. which i was supposed to get the other day! but turns out, she ordered one that isn't even made anymore.... so I'm still on no birth control..

my mom is playing phone tag with the office trying to get ahold of her to figure out whats going on, and to ask her to order in one that is still made..?

In the mean time, I'm still exercising an hour a day. only getting in probably 800-900 calories a day, if that. I"m really moody and frustrated.

I have other teenagers that had surgery, added on facebook. And a few of them had surgery in the past 2 months.. and I'm just seeing their progress. and I'm happy for them.. but it also makes me.. mad at myself? because i didn't do as well as they are!

I mean recovery wise, i did better. but weight loss wise... One girl has already lost more than I have total, in less than 2 months. She started at a higher weight/bmi than i did.. but still.. it's disheartening.

I don't know what's wrong with me. All of these other people are off of their medications, and losing more. where I'm still on my meds, and not losing at all, and actually gaining.

they're eating more less-healthy things (I saw one girl talking about how she was eating burger king and ramen noodles), and still losing... (WTF?!), where I'm gaining.

Why am I so different?

--------------------------

My theory? Honestly? When I told the doctors at the bariatric center that my problem was not eating enough.. and that I had been dealing with this my entire life... That I never really ate poorly (obviously on occasion at holidays, but on a regular basis i followed strict diets).. I don't think they believed me.

Then they put me under the impression it would be a cure-all. That I would get off my medications, and because I could only eat so much volume-wise that I'd be okay if i followed a relatively healthy diet.

But that's just it... The restriction didn't change anything. Because I didn't eat enough in the first place. I had actually been diagnosed with an eating disorder (EDNOS) 1 year prior. But My entire life, i was on diets and exercise regimens.. I reinterate this ALL the time. But no one seems to believe me. Of course I slipped up sometimes, and resented it for awhile but.. all in all... I did as well as anyone can expect a kid to do, at 6, 7, 8, 9, 10 years old, etc...

At my last appointment someone (I forget who or what title they were specifically) said I'd be able to get off of metformin... I wouldn't be on it forever.

But look at this. I've been on it since i was 7 years old. and I clearly still need it.

Nothings really changing.

I was under the impression things would change, but they aren't. for me, anyway.

All of these other people I see, who haven't had the same issues I've had since they were babies, that had surgery, are doing fantastic, and all of it is  working for them, but not me.

I literally have sat here and cried a few times, wondering why it's different for me. Why me. But then I realize I can't change it. and all I can do is do my est. Keep doing what I'm doing, and pray someone figures something out...

Honestly, one day I caught myself looking at pro-anorexica sites. which I've never done. I was just curious.. I saw these diets members had shared with each other... super low calorie and what not.. one diet was like "600 calories  a day" and it gave ideas on things and what not.. obviously it wasn't high in protein or whatever like my diet but.... I FREAKING EAT AROUND 600 CALORIES A DAY. these girls are skin and bones. and I'm still freaking obese after having my stomach cut out.

 I don't know. I don't know what to think. I'm extremely frustrated. This is the ONLY website online, for teenage bariatric surgery. I'm the only person out of a group of 30 or so people, that I know has had this issue.. (that I'm aware of. I haven't talked to absolutely everyone. but no one else has ever voiced their thoughts on this issue, either.)

So maybe it's just me. and I definitely DON'T want to persuade someone to not look into surgery, because they think it wont work for them. The only way to know is to talk to your doctor.

My advice, if you're looking into surgery right now? If restriction really isn't your problem.. If you have absolutely no problem with cheating on diets, and you exercise, and you're still not losing weight.. There may be something else going on.. that cutting out your stomach wont fix.

Maybe it'd be different with a mal-absorption procedure like RNY or DS... but, I had the VSG.. which doesn't have an intestinal component.. and this is where I'm at. what I'm dealing with.

Am I the only one dealing with this? Please for the love of god, if someone is reading this and has been through this, adult or teenager, please contact me on facebook or comment on here or email me or something... I would do just about anything to know I'm not the only defected human being with this issue.


I don't know. I Just don't know. I know I've said that like 20 times already, but I don't. It's honestly miserable. It's depressing. I had all these hopes that people instilled in me, that i saw in other patients.. and it's all come crashing down.

Obviously, I know I made a mistake by stopping the Metformin for 2 weeks. But good god. One doctor had told me I shouldn't even be on it. I wasn't 100% sure it would be that big of an issue.. but clearly it was.

I want the truth. I want to know what the hell is going on with my body. I want to know why things aren't working for me, the way they're working for other people.

I want to know why I'm becoming hypoglycemic. Literally as I was typing this, i was getting shaky. sure enough, my blood sugar was low. I just went and ate 2 slices of deli turkey, and a piece of string cheese and a few wheat saltine crackers, and I'm okay now.. but god.. I want to know why one doctor says i need metformin, but another says i don't.. I want to know why I"m eating less than most people, but still gaining weight. I don't understand it! I want answers!!

I"m like a minority, within a minority, within a minority.. By that I mean. I'm an obese teenager with serious heath issues that contribute. (1st minority) and within that, I had weight loss surgery, (2nd minority). then I'm having issues with the weight loss surgery. I"m not losing. (which would be the 3rd minority).

Ugh...

I'm at like 205 pounds now. eating about 700-800 calories a day. I can't physically eat more than that, without turning to junk like ice cream and cookies and stuff... Which I don't even really like! I don't have a sweet tooth. at all. So it's really hard to get in as many calories that my dietitian says I should be getting. I'm exercising an hour a day. resistance/weights & aerobics/cardio. getting enough fluids & protein. but nothings budging.

When I get some answers (If i get some answers) I'll get back to you all. I see the bariatric team again on August 9th. so maybe they'll have some suggestions. And I also see my endocrinologist on August 1st.. so maybe she will too.

But untill then, I feel uncomfortable blogging about surgical related things, because I'm not successful right now. And I don't want to lead anyone down the wrong path, by claiming otherwise. So I'll continue blogging, just more about the metabolic stuff (which is an area I've been slacking in, anyway.. this blog isn't just surgical. its about Insulin Resistance, Diabetes, thyroid issues, hormonal stuff, etc... as well. Anything that would die under the umbrella of "Metabolic Syndrome".).. not the surgical.

So. That's where I'm at right now. I'm going to end this here, and go to sleep.. Then probably go to the pool tomorrow, and just try to block this massive feeling of failure out of my head, until I can come up with something or a doctor can come up with something that will fix this. It's all I can do.

Seriously.. If you're a teenager that is actually reading this.. contact me on facebook or email me or something.. I'd love to know if someone is actually getting something from any of this. If you're a medical professional that is reading this, or someone with any knowledge on any topic that I cover here, and have ANY idea whatsoever of what could be going on with me that I could ask one of my doctors about, please let me know. I want to talk to people educated on the topic.. or that are going through what i am, or something similar. A support system is something that I'm lacking.

I hope you're having a good day (or at least a better one than I'm having) and I'll touch base, soon!

-Ashley

2 comments:

  1. I am not a teenager, I am 28, but I am going through a lot of the same things. I am so hormonal lately it's unreal. I go from one extreme to the other. I am almost 6 months out and just not feeling it anymore with the surgery. I unfortunately can eat, and it drives me crazy because all I crave is junk. I have eaten more candy in the last week than I have the last year probably. I NEVER craved sweets before surgery, always salty. I know a ton of my problems are hormonal. I had to call my doctor, again today, because once again, I am spotting/bleeding. Since surgery my hormones have been INSANE. I don't know if I still have IR, but all of my labs have been ok. So that is something. I started out almost double your size, and I am positive that with the right doctor and combination of medicine, you will get "straightend out".

    Here is my advice. Look up the 5 day pouch test, see if you can hit the reset button on your VSG. My husband and I did that one week and each lost almost 10lbs. Cut down on carbs if that is where your calories are coming from. I know I am sensitive to carbs and when I don't eat them, I lose, when I do eat them, and eat a lot of them, I gain or lose very little. That's what has happened in the last week. I have no desire to go low carb right now and I know that is killing my weight loss.

    Also, on your previous post about hair loss, have you tried Nioxin shampoo? It was recommended to me and it really help. I also chopped my hair off and I can tell a HUGE difference, I think the weight of the hair caused it to fall out. Also, prenatal vitamins. I am taking two a day plus biotin and I really do see a difference.

    If you EVER want anyone to talk to, I know I'm not a teenager, but I do know what you're going through, please don't hesitate to contact me.

    ReplyDelete
    Replies
    1. Most my calories aren't coming from carbs.. but i'm trying to lower them even though there isn't much i can lower. -- i'll look up the pouch test, definitely.

      I know its a hormognal thing. There are too many doctors and they're all saying different things. I don't know who to follow. and I don't see any of them very frequently. It's extremely confusing. And they don't listen to me when I say somethings wrong. its the most irritating thing, ever.

      I've never heard of nioxin shampoo, but i'll definatley check it out. and thanks so much for the response. I'm glad i'm not alone dealing with this. (:

      Delete