Mental Health and Severe Lipedema

 

Conditions associated with lipedema

 Depression and anxiety are very common in people with lipedema for many reasons including the lengthy time to diagnosis, repeated counseling on diet and exercise by the healthcare community when neither is particularly effective and because of the massive and sometimes rapid body metamorphosis over a lifetime. In one clinic, women with lipedema were found to be more depressed than patients with paralysis¹¹²


What happens to someone's mind when they try to lose weight and fail for years and society looks at them with disgust and tell them it is their fault?

What happens to someone's mind when even their own family may reject them for being severely obese for years and call them a "loser" and a "bum" and a stain on society? Even the loving ones will give advice and cluck over your rapidly expanding body while the mean ones will throw the party invitations in the trash and keep you away from the younger members of the family as a "bad example."

What happens to someone's mind when you are told over and over to do things that simply do not work, and told that you are a liar even though you are doing them?

What happens to someone's mind when you are made to feel guilt for every little thing you eat and you cannot like a normal person really enjoy food and inside is always that little voice telling you that you are "bad" for eating anything at all?

What happens to someone's mind when your body swells and explodes into "lobes" and you fight deadly infections which can pop up in 20 minutes time that put you in the hospital over and over, and you are told it is all your fault, and it would be fixed if only you would lose weight?

What happens to someone's mind when you try to tell doctors, my body is swelling up every time I sit up and I have to lay down for hours a day to keep from getting worse and they do not believe you or blame it on your obesity? What happens then when you talk about the leg pain that never ends and they think you are a hypochondriac or simply not exercising enough and that is why your legs hurt?

What happens to someone's mind when the price of all this is severe poverty, and a life that has been bombed out like a crater?

Many bad things can happen to a person's mind when the world is against you and you feel your body is against you too. Your own body becomes an enemy when it comes to lipedema. I hated my body for years more often then not while I attempt to be more forgiving now.  It seems to do things that scare me on a daily basis. Remember you just don't have the swelling and the fat cells increased in size, and the lipomas, you get pain, fatigue, food allergies and other endocrine problems in the case of many lippy.

When I had my weight gain of over 350-400lbs, I nearly had a nervous breakdown.  The only reason I didn't is I put myself into massive counseling, art therapy and depression support groups. The Chicago mental health care system was the prop that kept me out of the mental hospitals.  However doing all this, a major piece of the puzzle was missing to us all. The less understanding  counselors saw it as a non-admitted eating disorder or the more amendable ones went along with my theory of having a pituitary tumor or other endocrine problems. Many later ones knew something was wrong and supported my medical quest by the late 90s.

I know it affected me very badly on a mental basis. I had already been sick for years with my bad lungs and struggling in poverty and with this added on it was more then any human being could take. I went from fat normal to a spectacle in a matter of months.  No one could tell me what was wrong. I had gone from already midsized to the very extreme of human existence. I remember those days, I felt cursed and as if I had woke up in hell. The Stephen King book "Thinner"  was the opposite of what happened to me!

While it took me 17 years I finally got some help, but one thing I am coping with lately is dealing with the reality that lipedema is not a curable disease. One thing about me, both legs were growing in size every year. I did fear the day coming where I could not walk because the lobes were growing so huge on the worse leg. At least the treatments will help arrest this, and I shrunk my legs down, but it is scary to face a progressive disorder with no cure. I do believe I could have possible Dercum's too given my body-wide lipomas, lung problems and growing deafness but even just getting officially diagnosed with Lipedema Stage IV was hard enough.

Lipedema is a very disfiguring disease. This impacts many lippys. Being fat alone is known to cause enough trouble, in a fat hating society. My legs and body are extremely lumpy, I remember being worried at a very young age about this.  Facially I am not ugly and actually good looking from the head up, but body-wise, it's scary. I am not "shaped" like many fat women either and remember this being commented on during my severe weight gain by doctors and others. 400lb weight gains are not unknown in lipedema. Other severe lippys have told stories of the same things happening to them.

It seems to me that depression is a given with these things happening to a woman. I have been grieving a lot of losses this year. While I was freed of some of the self-blame, I had to face facts that my poor health from lipedema and other conditions has given me a far harder life. For an Aspie processing all of this and having a life that deviates so much from the norm, gives one a far harder challenge. There is no book out there talking about anyone who has had a life like me. What does a person do? How do you keep from going mad? I ran to God to keep from totally losing it. There is no script for this one.

I believe there needs to be more mental health care and support for those with lipedema. Some of these issues need dealt with. Many lippys are suffering for years without diagnosis. Many are succumbing to depression. I saw one presentation written about online that detailed the extremely high lipedema suicide rate, that deeply concerns me!

Women with severe lipedema are going through something very few people could imagine and it is intertwined with the most discriminated against condition on planet earth.

Many of us need counseling that can be direct with coping with this disorder and emotional support. Too many suffer in silence. This is a chronic illness that can bring severe loss to someone's life. It did mine and I had many other challenges to go along with it.  Many of us need counselors that can help us deal with our medical problems and gain more understanding of how to cope with life and living a better life with these extreme challenges.

See: My Emotions Dealing With the Lipedema Diagnosis

Why is my Life so Rotten?

Dear God, Tell Me Why It Went So Bad.

Sometimes even a Christian wonders why so much is going wrong. I don't buy into the Christianity that tells me if I have enough faith the piles of money will show up like Joel Osteen but sometimes I am serious wondering why the suffering quotient is going up so high. My husband bless his soul too, has been shaking his head regarding our collective misery. I have to pray about what is becoming of me and seek the spiritual answers too.

Sick And More Sick With No End

Why was I on antibiotics for three weeks, [swollen saliva glands] and then got a leg infection this week? That scares me. Maybe the doctor's aren't calling me back because they are stumped too.  All Aspies hate making phone calls, I can cry from the stress of trying to get something I need from neurotypicals. How pushy should I be? Should I yell at them yet? Will I offend them and ruin the medical relationship? Did I say the wrong thing? I may tell my doctor who knows I am an Aspie, that I can't take it anymore and want extensive refills on my antibiotics.

If anything the antibiotics should have prevented a leg infection. I did not have any leg infections for a year and a half. I felt free and like I had hope, only now to realize that has now passed like a fart in the wind.  I did my Flexitouch every day, except 1 day when I had the flu for 7 months. I wrapped without fail. Why am I being punished for something I did not do? I worked hard to keep my legs from being infected. I don't want to go back to the leg infections slamming me, and being afraid everyday. When they hit it is like the worse flu on earth and 4 days ago, I got a revisit to flu land with a high fever and pain. Will they even believe me? Or will they think I was not compliant when I was to the max?

Typhoid Mary ruined what little good in my life there was. I am sure by now she is on another tens of thousands of dollar cruise, enjoying her life. She would cry if she had my life and was forced to give up recreational shopping and traveling.  I am sure as I almost puked my guts out this morning from stomach acid run amuck and handed two-thirds of my income over to keep a roof over my head--my husband pays the other bills and put the check in the manager's slot yesterday, that Mommy Dearest is busy shopping from her second home in a warm state and going out to eat and enjoying her life.  Fun for them, and constant misery for me. Why?

Why did I win the CRAPPY LIFE AWARD? The only people suffering more then me are in prison or the street. I even watched Intervention the other day thinking, look at those thin bodies, and their families still love THEM with a feeling of jealousy. I know people aren't supposed to feel sorry for themselves. I have to smile and act with it, so I don't scare people away in the regular world and since this is my blog why not be honest. I know nice people around here who have helped me, and don't want to stress them out more. How did my life become such a mess? Every one I know who hit my age, got at least one break. Where's mine?

I'm supposed to start a new lung medication today but afraid wondering what else will go wrong?

Nothing but Endless Disappointment

I have gotten to a place where I expect disappointment. That is not good. I have prayed to God incessantly about what to do about my rotten life and have hit a brick wall.  I am sad and upset about many many things.

Self-help and endless advice books do not provide the cash or decent body I need to be happy.  Every time I relax and get happy inspite of these things and it has happened on occasion, it's like the rug is pulled out from underneath my feet. There is a void in too many places I can't seem to fill. There are things I want to do that keep getting thwarted. My life is one where I am too tired to do everything and crying in frustration about all my undone tasks and people I have failed. The literal physical exhaustion is wearing me down, and I fear a totally bed-ridden life awaiting.

I don't want to be Aunt Scapegoat with her head hung down, and the black cloud growing and sitting alone one day staring at a wall totally broken. I am scared.  I do not want to be her. I fear spiritual destruction at the hands of my Job-like existence.

 What happens to someone who is an outcast mentally whose body is an enemy from hell? Now I understand why people do drugs and drink themselves into oblivion. I don't recommend this of course but this world sometimes has so much sadness on the menu.

 For seasoned ACONS who I know read my blog, please tell me if this can be the stresses of no contact. A lot of people disappointed me within the FOO beyond measure. Why can't my brain stop ruminating about it? Am I buckling under the pressures of my year and half into no contact, having to walk away from the majority of my family and severe disabilities and financial problems combined? What if I am tired of having to be strong?

I Need Something To Look Forward To.

I need something to look forward to. Why can't I have ONE THING to LOOK FORWARD TO? I have hope in heaven but I need SOME HOPE in this life.  I do not think it is wrong to pray to God for some hope in my earthly life too or even just a time of respite. If I was a normal healthy person, I would hit the road right now seriously, go somewhere warm, go find some FUN.  Hey I could do this now but it would mean not paying the rent and flirting with homelessness. There must be some reason I keep telling my husband as a joke, or maybe it's not a joke, "Lets run away!"

All 12 step programs warn about the geographical cure not working but sometimes you just feel trapped. You want an escape from the grind. Some people with jobs may say "Every day is a vacation for you! Shut yer trap!" but everyone needs time away.

Positive Thinkers Prattle On

The positive thinkers would tell me, "you're not thinking positive enough", this is why nothing but bad things happen to you. In other words, the whole you are creating your own reality. But the inverse of that is they are just like my narcissists who told me everything bad happening is my fault. Both things are wrong.

 I'm sick of thinking everything is my fault. I am sick of being told if I do this, that and this, that the results will ensue. I spent three hours a day on my stupid legs for the last year and half and my bad leg still betrayed me. Why don't I get good results? I am sick of waiting for the hammer to fall, for the car to break down and the streets awaiting. I need a break.

If you were my life coach, what would you tell me?


Update: 2019: Dump the religion with it's endless false promises and the positive thinkers who do nothing but lie.

Surviving December Blues

[picture from Charming Charlie Tumblr]

Poor Charlie Brown. I was always into Peanuts and often I think Charles Schultz and I would have been soul mates considering his outlook. He always got to the right of the heart of the issue. I should post about my fandom regarding Charles Schultz and Peanuts soon.

Seasonal affective disorder mixed with 100% house-bound-ness like I am in jail, is not always pleasant. I've had one day outside living like a normal person in the last four weeks. It may warm up tomorrow and Friday to 40 degrees and perhaps the outside world will see my presence. Here's hoping. Around the third or fourth week of imprisonment, some of us feel funny. There was one winter so bad, 90 days straight passed by of staring out the window. If I had money, I would winter somewhere else, but it's not an option. Heat bugs me too so moving South is not a solution.

 Some Depression creeps like cat through a window, back to some of us when the days get shorter and darker. I have had it's struggles life-long, and have had to manage it the best I could, but December is known as the month I dread. Once I'm over it's hump, Jan and Feb aren't always so easy too, but for some reason December stands out more.  I'm involuntarily away from my peer counseling group which does not help. I should get one of those light-boxes maybe but some circumstances are impacting things. Waking up sometimes I wish I was a happy "normal" person who did not have their body dictate so much of their life. The sin of envy combined with the "should of, would of, could of" Sometimes in the morning I wake up and think "What happened?" How did I get this sick? How did so many things fall out of my hands or out of my reach?"

 A person can know they have some gifts and worth but regret is a river that can drown you and right now, I'm trying to swim for land. I'm praying to God too in doing so.

I'm trying to focus on maintaining myself, my kind medical professionals helping me with getting a bed to elevate my legs, to managing my apt--organization, Aspie focus and sensory problems, and how to get things done with serious cardio-pulmonary issues. One thing I've learned is I need to slow down, rather then work myself into a frenzy collapsing because my lungs and body have checked out. The walking and exercise has helped. All medical scores have improved including blood pressure and the rest. My leg has shrunk. I've been watching old movies, and doing cards and talking with friends and trying some semblance of happiness. Part of the formula here, is DO THE BEST THAT YOU CAN

I feel badly about how things panned out with the family. So much regret. One website helped me saying, relationships are two way streets, and if you are the one who is always trying, and the effort on the other end is at the extreme minimal or even toxic in terms of the narcissists, it's not your fault! They say going no contact is hardest during the holiday season and in the first year. With the family I lost, I will have contact with some of the kind ones, but I know my mother will remain central and I'm on the outs. Part of me thinks what if I had been healthy, or had money or have achieved more in my life? Would I have been "somebody" to them? If that is what it took, then it would have meant nothing anyway. My mother had her party where she gave out presents and almond bark, and well let's just say she is far more in the middle of everyone's vision then me. I will never know the satisfaction of grandchildren or a family or many things she has enjoyed in her life. It's kind of funny how things work out that way in this world.

December is not a fun time for every human being out there. If you are lonely or not feeling the holiday cheer, remember others out there are feeling the same. Not everyone celebrates Christmas too including some Christians who are not Jehovah Witnesses and many others. There are others who have walked away from the go-go greed fest too based on secular reasons.

  For those of you who find this a tough time of year, I will pray for you and trust me there is some of us who understand. If you have been broke for years all the focus on presents and shopping, can stink too. You watch people who seem to have endless buckets of money sink money equal to your rent just for the specialness of a TV being flat screened instead of a giant box.  You can comment here if you want. The forced smiles and the rest can be a trial. If I was not housebound, I would go do some work to forget myself, such as at a soup kitchen and am working on some cards for those in the hospital which I'll be working on after I write on here but many do not find this the happiest time of the year. Many of my friends have been good to me, one keeping up regular visits I always enjoy and another calling me every few days, to help keep my spirits up.

  Some of us await January 2nd, praying for the relief it will bring. Most Decembers of the last 10-15 years, I've been housebound with my bad lungs. It is not one of my most happiest or memorable months though there are others that keep me inside too. One sometimes has to look at pictures of last spring to know some sunshine and good times will return.