Self advocacy - my "why"

Hi all, a couple of disclaimers: 1, this may be long! 2, please know I am not upset about this, I just want an opportunity to share my side of this "comment" openly - my "why" if you will.

A poster recently made these comments as part of a post which I believe were directed at me (or certainly in part to me): "Alas, I may just be one of the last few who believe you wait in a line up fair and square, no budding. Maybe I am the idiot here who waited fair and square. I just think if you are going to push your way up to the front, you don't announce it with happiness and pride to all those waiting behind you, it's a wee bit tacky IMO." and: "While people seem to be sugar coating it by calling it advocating for ones self, it's simple math. If you push your self to the front of the line, others get pushed to the back."

Let me say this: I get this process is frustrating. We are at possibly one of our most vulnerable times. It's difficult. My issue is that the poster is making assumptions.

As such, I would like to share a little bit about myself so you know why self advocacy is so important to me - on this journey, in all of health care, and life in general.

As a 10 year old child, I had a severe childhood illness that put me into Sick Kids for 4 months. The doctors did not know what it was. I was presented as a medical case, written up in medical journals. I remember it all. I also remember one doc who thought I was faking for attention and wanted to prove that point. If I had let him, doctors say I would be paralyzed today. I learned then to always trust myself. Finally, a doc in the US contacted my doc with a diagnosis. It took another year and a half in physiotherapy and a neck brace to heal, but I got there. I basically missed all of grade 5 - I still remember getting home from the hospital and there was my unfinished science fair project: volcanoes.

Fast forward to adulthood. I was 23, and I was getting what I and the docs thought was terrible ear pain. It took 3 years and multiple specialists to finally diagnose a facial neuralgia. I had at this point missed many weeks of work, seen a dozen specialists, and I had to keep pushing for a diagnosis - they just kept saying "I don't know, but it's not 'this'". Ummm, not good enough - what is it? Because it kept coming back and it was debilitating pain.

I also have severe uncontrolled eosoniphilic asthma. I've been pushing since December for a drug that's new on the market, and finally last week got approved for it. It's specific to my type of asthma. I've seen specialists, done research, had to go for bloodwork, read product monographs, and had to keep pushing, because no other treatment has worked. I have days I can barely breathe, and I mean barely. I still have to walk my dog three times a day - I live alone, and on the second floor of a condo with no elevator. The stairs almost kill me. But I have to do it. So I push for treatment.

So what's my point. I work diligently to advocate in a medical system that easily tosses us aside. I have a BMI of 54, and I have been contemplating WLS for years. I feel ready now, ready to live the lifestyle needed, ready to do the hard work. Does that give me the right to jump the line? Of course not.

Here's my view on that: If there are open slots, and we don't call to fill them, they go vacant, unused - and what a shame that is. It's a missed opportunity. So I, like many, call to ask to be slotted in. I am fortunate that my schedule allows me. If I were trying to "bud", I would never share with you all that's what I am doing, because I would be fearful you would get "in front" of me. I am not fearful of that. I believe there is room for ALL OF US to call and ask for cancellations, to move at the pace that is right for us.

I know you don't know me, but I like to think of myself as one of the most open and generous people. I will continue to spread the message of self advocacy, and hope that it helps people on this journey just like the people who told me to call for cancellations helped me.

I really do wish everyone success and love.

WOW! I missed that post you mentioned. I was fortunate enough to call and get cancellations...I DO NOT consider it "Budding" at all! And DAMN STRAIGHT I am proud of it!

Any bitter betty that wants to scrutinize any of us who called to fill in cancellations are just jealous - they have every right to go ahead and call to see if you can get a cancellation.

This is definitely not a forum to make bitter comments or discourage anyone from doing what they deem to be necessary to get healthier - we are here to support each other. Anyone feels like hating on someone, feel free to hate on me :-) I got my operation 3.5 months after orientation. I called and got cancellations - I was desperate after so many years of struggling to start on my healthier me program.

Haters gonna hate :-)

But just know - I am a lover not a hater.

Thank you for the post it needed to be said - and advocate away!!

*PROPS*

3.5 mths is incredible!! Amazing.

Im a lover to and hope to be an inspiration in any way I can... just like everyone here is an inspiration to me. I really couldn't be doing this process without the people of this forum. It's truly been a godsend.

I couldn't agree more! I get so much support and information on these forums.

I don't care about folks picking up cancellation spots. I doubt that void would be filled otherwise, that is unless they call the next patient and say come in a day early which I doubt happens.

Aside from that, My comment is that by speeding up your appointments, you may be denying yourself the opportunity to better prepare for this life style change.

I needed 4 months to start changing my eating Habits in advance of orientation.

I needed the lead up appointments to work on those new habits and to discuss any dietary concerns in addition to making myself more physically active.

I needed 3 weeks on Opti to further prepare mentally and to know in my head, I could do this 100% providing I did not cheat on Opti. This was important to me to make sure my head space was correct.

The end result - Post surgery was easier for me to handle because I had ample time to make the changes needed.

Others are different, so to each is own. I wouldn't speed things up for myself providing this is a Life Change, not just pushing to the front to get a better seat. :-)

It is the for reasons above that those who have followed me, know I have had "And I say this knowing I am a lucky one", I have had little to no issues post surgery.

PS, Don't take what some people say personally. We all have different opinions. and it's an online forum where Context is hard to determine some times.

I wholeheartedly agree with the entirety of your post Wayne.

Hi Wayne,

I don't actually take what the poster said personally. I just wanted to voice my opinion. :)

I hear you about the importance of readiness and couldn't agree more. We all just come about it in our own ways.

I do appreciate the comment. You always provide tremendous insight and inspiration. Thankfully, I feel ready.

so.... i get what youre saying, but i also get where the poster is coming from... dont think i didnt call constantly because i did... however it is VERY frustrating when youre waiting for appointments and you see people who had orientation A YEAR AFTER YOU DID getting surgery dates.. the system is flawed i agree whole heartedly, its unfortunate... we are all self advocates.... its VERY discouraging because the system is you WAIT... this is what you are told and this is what is expected. its NOT fair that people can get those cancellations and stuff and im waiting 5 months between appointments and everyone is on different forums flaunting it... its FRUSTRATING... i am however grateful that it took as long as it did for me because it TRUELY gave me the opportunity to make sure this was the right thing for me and to discover things about myself. i was RUSHED through the process either. even the manager of the program at twh agrees that it isnt fair... and doesnt think its right... because it isnt.. so while i understand youre self advocating, i think the poster had every right to be upset because i know i sure as hell felt that way when i was waiting for surgery... im sorry that you have so many health issues, i hope that they get better.

I totally agree. The process is unfair and frustrating. I think our entire medical system is unfair and frustrating.

Where I disagree is saying I am flaunting it. That's like getting mad at people for posting NSVs because someone hasn't had one and they're flaunting. We ALL have the ability to call and ask about cancellations. If someone chooses not to, then don't turn around and be mad at the person who did.

Frankly, it's martyrdom.

I think we all just need to support one another. I am kind of private and keep my surgery info to myself but hey I applaud all of us for just being here and making the most important decision of your life. YAY US!