Pursuing an Out and Out Cushings Diagnosis?

I am not sure if I want to go back to trying to push that envelope again.

Should I do it? Getting the doctors to listen seems very tough. The inability to get an MRI did put me at a stand-still as so not passing the dexamethasone test. Intubation was too risky and I can't lay flat and breathe, though maybe now I'd fit in the standing MRI, I didn't fit in some years back.

One doctor told me years ago, I'd never survive the surgeries and treatments and to live the best life I could. This is one that diagnosed me with pseudo-Cushings based on three different high cortisol readings--high UFCS for those of you who know the lingo and a high ACTH . See Snippets of My Medical Records 

The picture seems to be adding up though.

There's too much that is wrong.

I have never met a woman with as many health problems as me. I spent time around other even super-fat people, and yes there are many co-morbs that come from that, but now we are entering territory where things are getting kind of weird. Even lately I am having trouble with one of my eyes with extreme floaters in it which is kind of scary for someone who is already nearly deaf.

Let's see what do I have on that list.

The weight gain, no periods except very rare unless forced by medication [one this entire year], when I had my initial huge weight gain, I had the purple straie and then some, hair growth--except for Spiro, weakness yes, central obesity--yes, Osteoporosis yes, diabetes, high blood pressure, skin problems, kidney stones, yes.

Add in severe hearing loss, vertigo, skin problems, and the list goes on and on...

There are lesser known signs too. By the way there are no diabetics in the family even among the fat folks, and yes I have the buffalo hump too.

I went through hades to get the hypothyroidism and severe "PCOS" diagnosed. Of course many patients with Cushings have told me they were diagnosed with PCOS at the start. PCOS is weird, you go to PCOS boards and while those women are a little bit fat and with a little hair, they are NOT SICK, many of them are even well enough to be trying for babies! I never have related to any of them!

I tested with HIGH CORTISOL OFF ALL STEROIDS and INHALERS for a few years. At that point in life, I was refusing fearing any more weight gain even against doctor's orders.

But I had to go back on a steroid inhaler a few years back for COPD. I wonder what that is doing to me? What did Flovent and constant prednisone do to me earlier?

I asked one doctor, SHOULD I GO OFF ADVAIR? COULD IT BE CAUSING these kidney stones? Trust me that is a scary proposition with the lungs. Maybe the doctors see this as a zero-sum--where I have to be on that medication. If I am already Cushingnoid, wouldn't that be making it worse?

I saw this video by accident on Youtube. I understand her tears. Read her comments below the video. I wonder if she is being ignored like I was during my weight gain? Her balding head and facial hair, means something is up. Can someone email another off Youtube? I don't have an account there. I'd like to email her and will definitely be praying for her.



I wouldn't doubt it. Why are doctors ignoring me now when I say Kidney stones go with Cushings? How come I only get silence when I say look adding kidney stones to the laundry list of disorders means something is going wrong? There are so many things wrong with me, its getting to the point of absurdity.  I am not sure where to go from here. I've been having some feelings of unwellness this weekend though not a full blown kidney stone attack. I will destroy my liver being on this uric acid medicine too long. Tell me what you think. This has been so long. How many years have I been sick? Since 1994 when the weight gain began and in various more mild ways before then.

Even if I am wrong about the Cushings and they are right about the severe PCOS/insulin resistance, there is something more systemic going on that is taking things beyond that.

Taxes

Hope you got yours done. I did the best thing I could have and went to one of those low-income "free" tax preparers and was able to help my husband get them done. The IRS by the way isn't going to help you especially if you err on the side of owing them more but there is something called an amended tax form. Anyhow this was very helpful to my life. There is something to be pondered here, why aren't young people taught how to do taxes or something useful like that in school? Anyhow I'm glad I trusted my instincts that something seemed very off with our taxes. My husband's freelance income makes them very complicated!

"Fat Woman Falls Through New York Sidewalk And It's HIGH COMEDY To A Bunch Of Jerks"

Fat Woman Falls Through New York Sidewalk And It's HIGH COMEDY To A Bunch Of Jerks

Hey it's NYC. I have lived in small towns the last 15 years of my life and HAVE fallen and usually people come to my rescue and don't abuse me. I guess some places still have decent people. I wouldn't want to fall in NYC though or any other big city. One friend convinced me there are some nice people in NYC, but I think this would be a more risky affair. She isn't that fat and is a good looking woman but read the story and see how she was treated by those who reported on her story. That just isn't right. She did not deserve that whatsoever!

By the way I could still walk when I was near 700lbs, I never fell through any sidewalks. I slipped on some ice during the weight gain where a bus driver and another man had to help me get up. I have fallen later on too, of course as well. They were blaming her for something that had nothing to do with her weight.

"The fact that she fell isn’t much news -- but apparently, the fact that she was very fat was, as her size is mentioned in virtually every headline on the story, which of course has led to lots of giggles and jokes on Twitter and in comment threads, especially since Williams had to be rescued from the hole she fell into with a “high angle rescue unit” -- in other words, an actual crane. 

Even the eyewitness reports were explicit on this point: “The woman was enormous. She had to be more than 300 pounds,” said Daniel Crumity, 44, of Queens, who watched in disbelief from a window inside the Blue Room. “The ground literally fell out from underneath her. “It happened so fast she did not scream or anything. Everybody in the bar got up to look.” 

The hilarity didn’t end when Williams was released from the hospital -- with a broken arm and a few cuts and bruises -- and mentioned to reporters that hospital staff credited her size with saving her life, saying the fall would likely have killed a thinner person. Of course, the idea that body fat could possibly have ANY beneficial effect is unthinkable to most, even though there is plenty of evidence -- both scientific and common sense -- that extra padding prevents serious injury in falls, especially in older people. 

In a masterpiece of victim-blaming, the commenter response then moved to the argument that Williams’ being “saved” by her size didn’t really count because a thinner person probably wouldn’t have fallen through the sidewalk in the first place -- even though logic would dictate that any given bit of sidewalk should probably be capable of holding AT LEAST 400 pounds. I mean, for safety."

The Men Who Made Us Fat

#3 #4

First Do No Harm website

Here is a website that talks about those who have dealt with fat prejudice in health care.

First, Do No Harm Real Stories of Fat Prejudice in Health Care

I didn't mention this yet, but I found out if you weigh over 400lbs they cannot remove your kidney stones by sonar except in few areas? If I get one that has to be removed, I either have to get surgery or go on a 150 mile round trip. Who puts the weight limitations on these things? It's like they plan to discriminate or something. The stories at this website are frightening though I relate to some. I have had doctors who have wanted to do the experimental stuff on me. I have gone undiagnosed like many of those folks. One thing I hate is misunderstandings about PCOS, where some seem to think fat causes it, when I had signs of PCOS while STILL THIN. It is a good website. The story about a man being misdiagnosed with MS is especially harrowing. I can't even imagine.

Who Are You Besides Fat?

  The things expected of me feel overwhelming. I'd like to get rid of that little voice in my head. I wonder if this is what happens to people who grow up hearing nothing but criticisms. Therapists would tell me to squash that little voice inside, but what happens when it is never ending on the outside? What if you get to a place where you start feeling okay and then the demands, expectations, your failures are thrown in your face every time you turn around and nothing ever changes for the better? What should a person do? Even religiously people post things like "God has big plans for you!" and I think, "what if one's life is rotten, isn't the test of faith to hold on even if your life stinks on earth?"

I feel like I am trying to hold on to WHO I AM. Yes unlike others who do not know who they are, I know what I stand for. I know what I value and care about, but why do I feel like I am being squished? There is no test like being over 500lbs for a person to face themselves and depend on God to make it. Truth-telling in American society means you are flat out hated, take my word for it.

Hey I'll admit any faults. I can't seem to manage things most people manage. I've checked out books on managing ones life, taking health classes and making health goals. I tried to follow the rules and things still go bad. I pay what bills I can on time. I do not drink, smoke or do any illegal drugs. I try to stay positive and all the other things you are told to do.  This blog yeah I know I complain, but I hold it in elsewhere. Does this make me a bad person?

Other people can eat cucumbers, vegetables, limit portions and lose weight, I do all of that and any loss is so slow, its extreme. I am hungry right now ignoring the hunger pain knowing I have to keep the calories at a certain lower point.  I can't seem to get the household in order, there is never enough money. My husband I do not think will ever have a normal job again due to medical and other factors. So what do I get for all my efforts but told how "bad" I am over and over?

Lately I feel like I am always under the gun and the lies that fat people were stupid, passive and out to please, being everyone’s buddy things made life hard enough for years. I was none of these things, which made some bigots angrier. They expected a certain personality and got me.  Would the therapists understand what 15 years at a supersized weight does to a person? Somehow I doubt it. Very few get it.

The other day I wrote this article  "Eccentric Fat Girl"

Lately I have felt kind of pressured, it has to do with trying to draw a line in terms of who I am and what kind of life I ended up with. I have realized, that for years, I felt suppressed under the judgments of others. Even today, I had one of the jerks of the Internet show up on the disability article.

#1. I will never be who they want me to be.

#2. I lack the resources and capabilities for #1.

#3. My own values and what I desire from life, are different from the society I am part of.

#4 Therefore I lack the interest in #1.

With #1, I have realized I am tired of living under a fog of being blamed, of being degraded for who I am and what my body has done. At this size it can be endless, and unlike others who can find therapists who relate, that is not a guarantee for me. It's been a tough week, of dealing with people who could only see my body and not "me" which included having a tax guy at a free low-income tax seminar tell me to budget money that does not exist to pay thousands of dollars in taxes--you do not want to know the tax rate on even very low paid self employed freelancers--my husband, with the eyes that say "Loser!", to having to make a chair request at a seminar for lip-reading.

I spent the last weeks of last month food insecure, actually going hungry. The food pantry only had some dried prunes to offer and some old bread. A kind friend bought us a couple dinners but there too you think why are we always the ones in need and never able to give. It wears you down like water upon sand. The friends who are by your side are loyal. But to be frank, the rest of the world goes on it's merry way. You do ask "What is wrong with me?"

 I was allergic to the other foods they passed out. I skipped acouple meals mostly breakfast and scrounged about most of the week. We have food now, but one thing about me and hunger, is my hunger pain doesn't lift. Once it starts, it can go for 2-3 hours or whenever I eat. I have trained myself to accept hunger pain, but there is a limit there, in terms of weight loss efforts. If anyone wants to be judgmental and say, cook frugal, I DID, that included making stuffed cabbage that lasted 4 meals and other such adventures.

Then I got a new nurse practicioner, she was nice, she meant well but then she told me, "you need to set goals!" She was informed that I had lost some weight and knew of diabetic improvements that have dropped a A1C score by almost an entire point but I find myself inside cringing, "goals?" Those usually take money and a body one can control to a certain extent. As if I can tell my body, lose 50lbs, and it will do it like magic!

What world do these people live in? It's not mine. My goal is to stay alive, an over-encompassing one, I suppose. One strange shocking item during my last medical exam, is my temperature was 95 degrees! Yes 95 and I've seen it that low during other times too. She asked me "Are you cold?" My TSH is normal so why I spent weeks freezing to death, I don't know.

I seem to have a lot of people lately tell me in different ways I am not measuring up. I am not sure emotionally how to handle it. Should I tell them all to jump in the lake?  People don't realize it but I hide a lot of pain. I've slogged on through depression and physical pain that would put down an elephant knowing there was no other choice but to carry on. No one likes a "victim". I share things on this blog far more openly then in the world outside of close friends. Being out in the world for me more and more seems to be about wearing a plastered on smile, dressing better then everyone because a fat woman doesn't make muster in sweats and ignoring the desire to just take to my bed and never get out again.  Maintaining any motivation among endless disappointments is getting harder and harder.

Maybe I am old, but since when did all the pleasure and leisure and meaning in life get wiped away for being successful? What if you want to ENJOY a few things or have a little FUN? What if you are poor and disabled, does this mean you have to be rendered a non-person?

 What am I supposed to do with all these expectations I can't meet and am failing to meet? There is a point you get to where you admit...

1. These people do not really know what you face or what your day to day life is like.

2. A person can only do what they can.

3. One can stand up for what they value and care about.

This is something hard enough to deal with. What if you live in a society where it spits on everything you care about and value, where it hates connections, hate the creative, hates emotions. Tells you in many different ways you don't matter and that your story is not to be believed? Truth tellers don't always have it so easy.

What if you don't want to, don't plan to conform and couldn't even if you wanted to?

What if you are tired of just being locked away in the big and fat box and are screaming to get out?

What if you have known for years, that something is wrong with your body that goes beyond the endocrine things they have diagnosed, and have been protesting for years to be listened to? What if you know something is more wrong then "bad eating behaviors", and have had to fight for years to be listened to. Wouldn't you get worn out after a certain point dealing with this stuff?. I even started this blog hoping a medical professional would see it and be the type to want to do some research.

What if you are tired of being told you are a nobody for being disabled, for not having children, for being broke, for feeling alone in what you believe?

What if you are tired of the constant demands and other pressures?

Do you silence your voice then, slink away and then shut up?

I can't shut up, but I am very tired.

Shane Koyczan: "To This Day" ... for the bullied and beautiful

Some language warning on this one, but his message rings true. Especially us fat kids remembered the bullying, being told to be things we weren't, given nasty names. I remember being told no one will ever fall in love with you, they did, moving to the back of the classroom hoping not to be noticed. One thing about schools, they have their pecking orders and "socialization" sometimes a word that can make the past bullied retch, that has nothing to do with learning. I am glad of his message for people to stand up for themselves and realize they are beautiful in their own way.