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increased suicide in ppl with pituitary tumors


maecar

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I was on the phone with a board member and we were talking about suicidal tendencies... so I thought this was relevant. Of course it isn't the whole article, just the abstract.

 

Pituitary Tumors and Suicide Abstract

 

Background: Current data suggest an influence of the hypothalamic-pituitary-adrenal axis on suicidal behavior. The frequency of pituitary adenomas in suicide victims has not yet been investigated. Objectives: The aim of this study was to assess whether the incidence of pituitary adenomas is correlated with suicide. Methods: Serial sections of 151 human pituitary glands obtained upon autopsy were examined microscopically. The glands were collected from 70 suicide victims and 81 subjects whose deaths were classified as unexpected or accidental (nonsuicidal group). The sections were stained with hematoxylin-eosin and the presence of adenoma was confirmed by immunostaining for collagen III. Results: In the suicidal group, pituitary microadenomas were found in 32 cases (47.7%), while in the nonsuicidal group microadenomas were detected in 15 cases (18.3%). The observed difference was statistically significant (p = 0.0003). The relative risk ratio of suicide in persons with pituitary adenomas was estimated at 1.9. Logistic regression analysis in a model controlled for age and sex showed that microadenomas constituted a unique risk factor in this model. The immunohistochemical phenotyping revealed a higher percentage of immunopositive (secreting) microadenomas in the nonsuicidal group as compared to the suicidal group (80.0 vs. 59.38%) and a predominance of growth hormone-secreting microadenomas in both groups. However, these differences as well as differences in the hormonal profiles of microadenomas between the groups were not significant. Conclusions: These results suggest that pituitary adenomas belong to suicide risk factors.

 

Copyright ? 2007 S. Karger AG, Basel

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I will never forget three years ago when we first got a diagnosis. We were at a store and M was telling the clerk "we finally have a diagnosis of cushings disease."

 

The lady behind him turned white as a ghost! And then she went off and said that her husband had had it and finally committed suicide. Then, "you need to do that too because you will just get tumors over and over again and cause your family tons of misery!"

 

I wanted to say, "sounds more like you off'ed him" but I didn't.

 

We were discussing this the other day and don't get me wrong, suicide will never be an option for m, BUT I found myself thinking although I was optimistic about our outcome and pooh-pooing her at the time, this is a woman who truly understood the journey and the grief. I don't think she should have said what she did, but gotta give her credit for knowing the road. As far as the toll on EVERYONE, including the victim of cushings.

 

This study, sadly, does not surprise me. I am sure many of them were undiagnosed.

 

jules

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Jules what that woman said is just horrible! I guess I understand where she is coming from, but it is still not something that you suggest to anyone... what was she thinking?

 

 

Obviously this shows the correlation to the mental instability that Cushing's (diagnosed or diagnosed) creates in a victim. It is very sad.

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I'm with Dave... NOT SURPRISED!

 

I have to laugh when the medical world makes "amazing new discoveries" that WE, the SUFFERERS, have known all along! ;)

 

Not sure if this is appropriate to bring up in this post, but I for one have struggled with suicidal thoughts and self-injury for about two years. Ironically, right around the time my symptoms ALL started intensifying. Thankfully this is under some measure of control and I realize that I don't want to die... I just don't want to live like this.

 

Shutting up now!

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Lyndsey, this is exactly the place to discuss these things. I was discussing suicide and self-mutilation with another member... In myself I know that these tendencies are two entirely different things driven by different emotions, although many docs see them as one and the same.

 

Right now I don't have either of these symptoms, however I have had them both in the past. My self-mutilation presents itsself as almost a compulsive behavior-- if there is something sharp I cut. If there is a small lesion I compulsively pick-- I cannot help myself. I have linked this behavior to sleep deprivation. Now, when I feel myself get to that point I have to medicate to sleep at night... you know so I don't completely lose my mind.

 

I haven't been suicidal in my adult life (more when I was a teenager), however I imagine if my situation were different I really see how that could be an issue. If I didn't feel I had any hope, or support, or money to get help-- that would certainly create a sense of desperation that could cloud a mind that is already plagued with anxiety, panic, depression on top of constant pain-- and could definitely lead to those toughts.

 

I just want to let you know that this is a safe place to vent freely and discuss these issues. If you ever need to talk, please feel free to call me-- really anytime. I get it-- it sucks, there is no way to sugar coat those feelings.

 

sending hugs!

Carrin

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So not surprised by this. I had a brother and sister both take their own lives. This was before we knew about cushings. However, I know they both had it now. Somehow the depression of cushings has passed me by; for which I am grateful.

love,

melly in nv

 

 

ETA: Thanks for sharing this Carrin!

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I'm not surprised Carrin either...very sadly.

 

I'd like to see the figures though for who does it as direct result of the tumor, & those who do it for the runaround , stress , sadness , pain, anger & frustration..missed anything out ?? the medical world gives them in their quest for help & diagnosis.. Bet they wouldn't publish that !!

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I truly believe the psychological aspects of this disease are rubbed raw by the dismissal and carelessness of the doctors.

 

This I truly believe... good point, Jo.

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I can totally picture ending up in a suicidal state if what I am going through didn't have a name. To feel progressively worse, lose your vision, have chronic pain everywhere along with never ending headaches let alone losing control over your body and looking and feeling ugly and to be told that it is your fault on top of it all? Who wouldn't?

 

Which illustrates another reason this disease needs to move from the "Rare" disease catagory to the "Hard to diagnose" catagory and have doctors get more educated about this. Of course, of their patients that did check out, the local docs are probably saying, "Well they were depressed and overweight and just not interested in helping themselves which is obvious because I told them to diet and excersise and they just got bigger. If they really don't want to help themselves, what could I have done?"

 

Thank God for this site! Mary, you are a life saver in many ways!

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While talking to another member recently who was feeling suicidal, I told her I thought we all felt that way at one time or another. I agree with Jo, the frustration and hopelessness we develop as a result of being dismissed and even ridiculed by some doctors has to contribute to our feeling this way. I don't believe I've ever discussed suicide with another Cushing's patient who hadn't at least thought about it as a way out of the misery. It's good to know this is part of the disease and that others feel this way as that may be what a suicidal patient needs to know. It helps to know it is a symptom and that we are not alone. And it helps to know we can live through it and get better and that the suicidal feelings can be a thing of the past.

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I think it's a combination of the two & possibly the being blown off by doctors is the final straw.

Yes, Lyndsey, here is the perfect place to talk about it. I think most of us here would understand this and not be judgemental at all. It's very scary to just be a bystander though.

 

Okay, I'll come out and say it. I was the one Carrin was talking to. I had tlked to her because Justin seems to be going to his "dark place" and it really scares me. I don't think it is as bad as last winter and pray that it doesn't get that bad again. In part it might be better because he no longer lives with us and will not feel "stuck" when this comes over him.

 

I really never intended to tell you guys this because it seems so horrible. But as Carrin and I were talking and I was saying how I couldn't tell my sisters some of these but I could tell someone else who has maybe gone through the same thing, it hit me that even though I could talk to her privately I resisted saying this here publicly. Probably because of what I said before, it just seems to horrible and feels like something we must hide.

Carrin said(and by noeans putting me down for not wanting to go public) "how can we expect to raise awareness of this disease if we can't even tell some of the worst things to people who would understand" or words to that affect.

Reading this tonight, I decided she is right. Justin isn't the first person and sure won't be the last to have these feelings. He really doesn't talk about it but after watching him in this phase all last winter I can spot it. Pretty much sends me into my own version of a "dark place."

This does seem to be one aspect of this disease we don't really discuss here. And not all people have this symptom (Melly, I'm so sorry about your siblings, they must of felt so alone) and it's possible it's more prevelant in the younger folks, they have less coping mechanisms.

I actually feel better for having gotten this out in the open. The lst couple of weeks have been pretty tough.

 

Really glad, this subject was brought up.

 

Judy

 

p.s. excuse all my mistakes, when I went back to try and correct them the cursor just "ate" he next letter in line & I didn't feel like retyping the whole thing.

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Judy, I know those dark feelings. I have always been a happy, cheerful, glass-half-full, rosy-colored-glasses type person. But the couple of years before my surgery were so terrible at times I could not think of any reason to live. Not even for my girls. I would have never made them suffer suicide from me, but I was at the point multiple times that if I had died I would not have cared. At least that's what I thought. Those are the darkest days, and I never want to live them again. I had a few of them after surgery, too, but they went away after I (for lack of a better term) "balanced out". It's hormonal. It's the disease, and when the combination of hormonal whatevers hits some of us (many of us), we can't help it.

 

Justin can't help it. Love his heart, he can't. What he can help is whether he shares it with those who love him. I felt like I couldn't share how I felt with anyone until I found this board and the fine folks here. I'm sitting here with tears pouring remembering. God, I never want to go through that again. Give him a place to share. (I'm sure you already do.) And make sure he doesn't crawl into the deep, dark hole that the disease drags one into. You may have to intervene. I wish someone had for me. I just didn't know how to tell someone enough so they would. Again, thank God for these boards. For some wonderful, fine people who listened, loved, cared, and helped. (You know who you are!)

 

Lots of love. If I can ever help, you know how to reach me.

 

XOXO

Robin

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Actually, Justin never told me himself. I work in a very small business and my boss' son is four years older than Justin. They spent alot of time together and Curt is kind of like Justin's big brother. I trust him completely, if Justin is with Curt, I never worry. Anyway, Justin told Curt. But I'm thinking that he surely remembered how this worked. If he told Curt certain things, I found out. From Curt's mom!!! So I'm thinking that inderectly he knew I would find out. He also had made friends with a guy on a messge board for a game they played together online. I discovered he talked to him alot. This guy is tech of some sort in a hospital & was very good with Justin. Thank God he had someone to turn to - I really don't know how you tell your parents that.

No matter how you look at it it's a tough spot for everybody. He did have some good friends who helped him through the worst.

 

I think it scared him so bad he felt he had to talk to Curt. And I think he talked to him alot.

 

I wish noone was in this spot. Much worse than the physical aspects I think. There were days I really feared he would not be alive to get a diagnosis. And then the _____ doctors here in town would think they'd been proved right. I told my husband that if anything happened to Justin I was going to make sure there was an autopsy and they would make sure and check his pit.

 

Judy

 

Judy

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I also felt this way in the beginning when I first had to stop working. I felt so worthless by not being able to my job and letting so many people down. I was getting no answers and had not found this board yet. Then my beloved it dog was diagnosised with an aggressive, non treatable cancer. I just broke. I saw no hope. I think that is the basis for feeling suicidal.

 

I never thought about any details of doing it, just that I was so depressed and utterly hopeless and terribly alone. Finally one night I picked-up the phone and called my Mom and asked her to come stay with me for a few days. I knew I shouldn't be alone.

 

Well, that was like 2 years ago and she's still here. :yeahrite: Every now and then she'd ask if I wanted her to go home, but I just knew living by myself, staying home everyday was not wise.

 

Honestly, once I found you guys, everything changed for me. I finally KNEW I wasn't crazy and that there was not only hope, but certainty that there would be people who would stay with me and that there would be an end to this suffering!!!!

 

When I read the post about the Dr that had helped diagnosis Sam commit suicide, my heart just sank. In general, keeping a painful secret is NEVER healthy. Finding the right person(s) to reveal it to is the difficult part.

 

Let's make a positive pact amongst ourselves, that we will always be bold to uncover this demon and that we'll talk with others to help make a safe place for them to talk about their feelings.

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Gina,

That's a beautiful post and idea that you shared - thanks so much! If we know we have a place to go and it's ok to talk, it might help at least one person.

There are so many parts of the disease that outsiders don't understand that can push a patient to the brink: the horrible physical changes, the pain, the never-ending tests, the idiot doctors, family and friends not understanding. It's a horrible thing. Kelly

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Wow, what a topic - maybe not a pleasant one but a VERY necessary one. I do agree that many, many people with these problems run into very dark times. For me I think it was the combination of just feeling so unendingly tired that I just didn't care if I woke up the next morning or not. All I wanted to do was to feel rested and if I had to go to sleep forever to do that then so be it. This was before I even knew there was such a thing as Cushings and at the time I was convinced my problem was with my thyroid and couldn't get a doctor to run with that. Now I know that the cortisol problem was the thing pulling of everything else but at the time I did find a dr to treat my symptoms of low thyroid with a small amount of Armour and it did help quite a bit. Not only did I feel at least some better physically but the fact that SOMETHING helped, gave me back some HOPE that I would eventually find out what the problem was and be able to fix it.

My husband has been great through my search for health but I could not share this darkness with him and certainly not with my kids who were teenaged or younger at the time. I just never felt that anyone else would have understood. It would have made it seem as though the doctors wanting me to go on anti-depressants were right and I somehow knew that was not the solution for me. Not to say that they don't have their place but I knew it was not the primary cause of my troubles.

I think it is a combination of hormone imbalances and the lack of hope that it can get better that really take the toll. It is so much easier to take the pain and ups and downs since surgery because I can tell myself that it is actually helpful to have this pain as my body readjusts and heals. In short, I have HOPE!

 

To everyone out there who is as yet undiagnosed, keep up the fight.

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Gina,

 

What you said about working makes so much sense. Last winter Justin quit working as he was missing severall days a montha and the boss thought he'd been out partying too hard. Mostly it was just too hard to do and he was only sacking groceries at the time but he had to talk to people all day long. At first he seemed to enjoy it but as he got sicker it really took it's toll on him.

 

In May he & his girlfriend wanted to get an apartment and although I wan't real crazy about the idea I knew it would do no good to object. For one thing he was 18. The end of that month McDonalds asked him to come to work. His girlfriend worked there and he was always there late at night helping them clean up. I'm very proud of him in that he has only missed about 5-6 days of work. He likes the people he works with and wouldn't want to let them down.

It's possible, that with his work, his "dark place" may not be quite as dark. And that is a relief. You helped me figure that out.

 

And Carrin, thank you for starting this thread. It's been theraputic for me. How I pray for a diagnosis though. And yes we must talk about it. It helps me just knowing Justin isn't the only one.

 

Speak of the devil, he just drove up.

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I wanted to add some additional information on this subject that I learned a few years ago that really surprised me.

 

When a patient starts on an anti-depressant the doctor always has them come back in maybe 3-6 weeks later to see how they're doing. Of course the primary reason for this is to see if the medicine is working, any side effects, etc. But another factor is that if someone is going to commit suicide, they will not do it when they have hit rock bottom, but rather when they are on the way back up to normal.

 

They are too "weak" in terms of their physical and mental energy to comprise and carry out a plan when they're at their lowest point. It's when they are on the way up to being back to normal that they then carry out a suicide attempt.

 

This really shocked me because I always thought when someone was at their absolute worst, was when friends and family should be the most concerned......and they should, but the data shows that what's important is to NOT turn off your sensitivity meter once they start making progress......those days are actually MORE critical than when they were not being treated.

 

It's during this time "on the way back up" that they are likely to still be thinking incorrectly in terms of "things will never get better, I'm useless, etc." However, they now have enough physical and mental image to con-cock and carry-out a plan.

 

So, this is also the time when the prescribing doc wants to see the patient to find out where their thinking is at that point in the recovery.

 

When your brain chemistry/hormones are so messed-up that you're having thoughts about hurting yourself, you just have to rise about what you're FEELING and intellectually convince yourself, that's the depression talking, not you.

 

I will say that after experiencing such severe depression, I do understand why someone would think suicide is a good choice. You're truly sick, as sick as if you'd had diabetes or some other illness that impacts your bodies chemistry.

 

I'm really, really sorry Carrin, that you and your family have suffered the lose of 2 people in your family to this illness called depression. You're very courageous to fight for your health and I hope that as your health is being restored, you know your brother and sister are cheering you on!!!

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This doesn't surprise me at all - especially with the way I have been feeling lately - this topic seems to have come up at a very relevant time for me. I was reading something the other day (can't remember where!!) that was saying that Pituitary patients are often overlooked and don't get the support they deserve because often, they don't 'look' too ill. I'm sure this all adds to the feelings of isolation and despair that seem to go along with this hormonal roller coaster ride.

 

I am glad we can all discuss these things here. It really does help to bring these things out into the open.

 

Thanks guys!

Love,

Caroline x

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Being ignored, blamed and ridiculed takes a toll on everyone.

 

I've never liked rollercoasters---and I hate the physical/mental/emotional one I'm on right now. I'm just trying to stay seated and keep my hands inside the car.

 

I managed to get into trouble before I got suicidal. My thoughts included plans on how to get my old doctor's attention: throwing a sledge hammer through his window.

 

I knew that it was wrong---but I was desperate for someone to listen to me. I couldn't figure out any other way to get anyone's attention. Thankfully it didn't happen...but that's when I knew something was terribly wrong. I was able to share those thoughts with someone---and they didn't go all nutty about it. That would have been really hard to deal with.

 

PS: that doctor still doesn't know how close he came to having broken windows.

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Mellie, I am so sorry to hear about what your brother and sister has gone through. I imagine that this is a very touchy subject for you to talk about, I don't know that we ever really heal from these tragedies-- how can we?

 

Thank you everyone for sharing your history, this thread will most definitely help others. I remember right before I became physically ill, I was struggling with huge amounts of depression,anxiety and experiencing panic attacks daily.

 

I finally went to the dr. after several episodes of paralyzing despair. One of these epsidodes 6 years ago left me motionless on the kitchen floor crying for hours. I don't know how long because I actually "lost time" during that one.

 

I felt like someone laid a blanket of despair over me. I wasn't crying over anything, I was just overwhelmed... completely and hopelessly overwhelmed. At this point in my life I wasn't thinking about suicide, but I was certainly picturing the world without me in it. Infinite sleep. I got myself to the dr. and cried and cried in his office-- I told him I thought I was going crazy. He replied that crazy people don't know they are crazy. It didn't make me feel better. He asked if I was suicidal, I told him I didn't think so. I did tell him, however, that I did picture the world without me in it a lot. I thought about going into a peaceful sleep and never waking up. He sent me home with a prescription for zoloft. No follow up necessary.

 

My husband and I have talked about this a length and we feel that he did a huge disservice to me and my family. I was obviously not stable, this situation should have at least been referred on for psychiatric care and possibly even a hospital stay would have been warranted. I know that feeling hopeless and picturing life without you in it are different than suicidal thoughts & devising a plan, but I don't believe it is that far of a stretch.

 

I did refer myself to get psychiatric care and I started seeing a counselor to help me keep these thoughts in check. Eventually, the mental illness aspect of my disease faded out and I haven't been on anything other than ativan prn for anxiety for a couple years. But, even though I feel I am "mentally" together right now it is always looming. I liken it to walking around with a bomb strapped to your chest-- you know the bomb is there, you know what the bomb can do, you just pray that today isn't the day it is going to go off.

 

I have handed over the keys to husband, and I would suggest that everyone have someone they trust take the wheel in this area. Sign a contract with them before hand stating that if they notice these behaviors/emotions in you they will tell you and help you get the help you need. During a time of my lucidity I told him all the precursors and signs to look for and he is to sit me down and tell me if he feels we are treading in dangerous waters. I am so afraid that I will not recognize them, or worse ignore them until it is too late.

 

Judy, I commend you for taking a wide-eyed interest in your children. Many parents choose not to "see" what is right in front of them, you are right to be concerned-- these are dangerous times for us especially-- the mental and physical illness combined are tortured.

 

Cushing's Syndrome/Disease is direct violation of the Geneva Convention. It is not humane.

 

To make a complex situation more confusing we are so afraid being labeled at "crazy" or "depressed" that we actually FEAR telling any medical professional about it because we know that it will only serve to muddy the water. Shame on them.

 

I know that someday Cushing's will be a household name. In the last several years we have seen the once taboo "bipolar disorder" being paid attention to. People listened to those desperate people and they will hear us very soon. I just know it.

 

I guess this is long enough,

many hugs to you all!

Carrin

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10_23_07_DontDoIt.txt

 

The article is about pituitary tumors even, not even Cushings.

 

The symptoms may have been from non-functional (non-hormone creating) tumors in those cases.

 

 

So, if just having a tumor in general increases your tendency, the risk from such a disease as Cushings would really increase it.

 

But, we all know what Cushings does, and finding the increase tendency of having Cushings would not be surprising.

 

 

But, we also don't know quite as many with Cushings who have gone through with this drastic decision for many reasons:

 

1) We all found this site so we all have a great support network. It is true that we don't have face to face (unless lucky enough to go to a Cushie meeting, I highly suggest it, plan your own if you can! Even meeting one person is wonderful).

 

2) This also implies we have an informational network. Some of us may or may not have Cushings, but we all have access to tons of medical inforamtion here. We don't feel helpless; we are empowered.

 

3) Many here (not all) have or have had insurance/money to help get treatment. I know this is a bold statement, but I will explain later. I am NOT saying we have it easy; this disease sucks away your finances as well as your life, trust me I understand.

 

 

 

Of course, even with all the right pieces: support, information, and finances, we still have issues; we still get drepressed.

 

It doesn't ensure we get diagnosed. So many of us have a hard time, and it's so hard.

 

 

But, no think of this.

 

You are one of those people who gained that weight; you trust your doctor with that old school loyalty - they know what's best.

 

You had saved up money for a year or more to see him since you work full time, yet get paid a pitiful amount; you have no insurance; it's all out of pocket. No chance of ever finding online support - you've never had internet - not on your salary.

 

The doctor tells you how all these things can be caused by your unhealthy eating habits, perhaps your mental instability as well.

 

You of course trust him since he does know best.

 

Life gets harder and worse, issues keep rising up, and it's all your fault. If only you'd excersize more, eat less, but even walking hurts.

 

You are killing yourself, and don't want to go to the doctor for symptoms since the main cause is what you did - you haven't excersized and ate well.

 

You live life day to day, one day at a time until either these symptoms cause an early departure or you succumb to you "mental instability" and hasten the process yourself.

 

 

Living without insurance is VERY common in the US. Point #3 was not about all of us being rich or well off; it was that even though some of us are barely making it there are even more who aren't making it at all. Their only chance is that they never get ill.

 

 

On my emotional days, it can even hurt to walk around (mall, downtown, etc) and see people who look a bit Cushie to me, but also look like they have quite a low income (not homeless just low income). People I know, acquaintences and such, may even make a comment on how obese or distastful they look while inside I am crying for them.

 

No one knows how they feel. Perhaps that person is just overweight, but maybe she is Cushie; maybe her husband beats her and food is her only friend; maybe she has low thyroid; maybe she's given up on life and is coasting.

 

Typically, I walk and shut it all out and only let people in partway. It would be too draining to feel that for everyone. Thus, I come off as more cold than warm.

 

 

Wow, I got so sidetracked.

 

The point was that I feel for all those people who slipped through the cracks, the people that doctors couldn't see due to finanace or wouldn't see due to misconceptions of obesity and blame.

 

It's sad, regardless of whose fault it is. I don't care if it is their fault for being poor or having no insurance (taking a risk), no one should have to pay with their life.

 

 

 

Anyway, as far as depression, some have read some of my posts on being hopeless so I've felt it too. And, I have cycles. When my mind is extremely hazy, I am unhappy I guess, but not able to concentrate enough to be depressed.

 

To be depressed, you need to snowball your thinking, one thing leads to another leads to another, etc. I can't think of both things in full at once long enough to lead them on at my worst. Additionally, even thinking one is too much effort. There is a lot of energy spent on it, and I'm running on empty at those times.

 

Thus, I am typically only depressed on lows I think. I believe the transition from high to low (or low to high) is when I get the most confusion. When I adjust, it gets a bit better, concentration-wise.

 

I do think I'm entering my low....I had felt I was, but only was intermittently low, funny how I know it all, but didn't associate right now that I am too confused to be depressed. Perhaps I'm wrong and it's low to high; we'll see.

 

I was fine at the beginning of this post, but now I'm so confused; getting that way so easily lately.

 

But, even at my worst, I would never hurt my friends/family that way, but as others have said, at my worst times, I wouldn't mind if it ended (as long as it wasn't my fault - no guilt).

 

Can't go too much into detail about my experience while lacking concentration - too hard to recall and feel and tell.

 

Feeling for all that have to deal with this,

Nick

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What a sad topic, but as someone else mentioned - very necessary. I've been suicidal off and on since 2004. I believe (for me), it was the combination of being sick and not being understood, therefor feeling very alone. It's bad enough being sick, but then being punished for it and ostracised from those you expect to love you the most is such a hopeless feeling. If it weren't for my husband, I would have done it because at that time, I had no other reason to live.

 

A special thanks to my husband who has supported me all the way through this journey. It doesn't take any words, it doesn't take any advice either, rather just knowing someone is there that loves and cares for you unconditionally is all that matters and all that's needed to give someone in need, the strength to carry on and give life a purpose!

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