A journal of healing

Posts tagged ‘weight issues’

Fighting auto-immune disease

I am in a battle of my life, really and truly. I have auto-immune diseases. It is a fight many people participate in. But for me, I have the stigma of being fat. It is the first thing that medical providers hone in on, sometimes exclusively. But now I am in another tail spin. Let me explain.

I have psoriatic arthritis, PsA, and Psoriasis, P. I was diagnosed with them after I went through a horrific time in my life. I was divorcing after twenty-seven years with an abusive husband. I had to sell the home we lived in for fifteen years as part of the settlement. I lost my job that I loved, although there were some real stinky issues there too. I basically lost everything. But I got through it and then, I moved into a great house and went back to school. My life turned out great. But my body suffered from all the trauma and stress.

I ended up in the hospital with blot clots. The clots resolved themselves and I was truly blessed because there was one very close to my heart. I was put on Coumadin for life. People were quick to say, “Fat girl has fat blood and hence her issues.” Nope. I have an inherited disease call Factor V Leiden. It comes from my father’s side. It has absolutely nothing to do with being fat. But after being in the hospital, they put me on a strong regiment of blood thinners to the point I bled out. They needed to stop my periods. That was another battle but finally I had a hydro thermal ablation.  But the anemia and other issues took a toll on my body.

I was on a path of a wonderful new life. I was happy. I met a great guy. I loved my house. Life seemed great. But this weird rash appeared when I was going through the divorce. It got constantly worse, spreading all over my body. I itched. I went to the dermatologist who had no idea what it was. I also noticed that I was having pain, achy pain in my joints. Not enough to slow me down at first. I used to play tennis three times a week, mow my lawn and walk all over the place. I had always been a large active person.

I was teaching at the time and some days I could not stand for very long and walking became painful. I bought ugly shoes and went to the doctor. Her diagnosis was I was fat. “Lose weight” was the prescription and take Advil. So I took mega doses of Advil. Finally, when my hands started to turn into claws, they paid attention. I would sit and cry for hours from the dull burning that radiated in my body. It is hard to explain the pain to anyone who does not have this disease. My skin looked like I had the measles and I would scratch to the point where I would wake up with blood stained sheets from scratching in the night. I did not sleep for more than two hour blocks.

I was tested for rheumatoid disease and came back with a confirmed diagnosis of PsA and P. My life changed completely. I went on prednisone, methotrexate, and continued with Advil when needed. I felt better, but the results from those drugs impacted me in a bad way. My kidney crashed. I lost all function on the right kidney. I had been peeing blood for months, but they said it was the Coumadin. It wasn’t.

My glucose has always been low, much to the chagrin of doctors in the past who expected high glucose because I am fat. We do not have diabetes in the family. My A1c went from 5 to 13. Hello!!!  I also gained 30 pounds in a very short time. They took me off the prednisone and then the methotrexate. I would get very sick after I would take my shot. My body was telling me to stop. Next, they tried me on Humira, which did nothing, and then Enbrel. The Enbrel worked for 8 years. I started getting horrible cramps everywhere in my body and the pain came back. I also slowly put on weight that would not come off. This also is a known side effect of Enbrel. All the drugs I have taken, except Otezla which made me feel sick all the time, are known for weight gain as a side effect.

For the next three years, I went through a series of taking every drug on the market for PsA. I had horrible reactions such as feeling hung over to not being able to walk from the pain. I had horrible IBS brought on by these drugs. I could not go anywhere including going to work in the morning without the fear of crapping myself. And I had a few episodes where I did. It was humiliating and horrendous.

My kidney that had gotten better was starting to decline. I passed over 50 kidney stones. I have about twenty in a box. Some were huge and the doctor took them. They were all uric acid based stones which is a product of PsA. There were stones in the right kidney that were too big to pass. I spent days in agony when I was passing a stone, but I still went to work. I passed one at work. Talk about a high pain threshold.

In 2016, we decided to try Humira one more time since it was all that was left. It almost killed me. My glucose steadily inclined, my kidney function declined and all the while I was steadily gaining weight. I was miserable. It is hard to understand the frustration and discomfort of not having control of your health. And mine was getting worse in the name of drugs.

Finally, last year, I was put on the most expensive PsA drug out there: Stelara. One shot costs $20,000. I had to exhaust all other options before the insurance would cover it. It is a miracle. I have little to no psoriasis. My PsA pain was vastly better. But by now, I have lost a lot of my stamina. There is damage in my joints that will never repair. I need to have my one ankle fused but I refuse. I have damage in my spine and hips. But I had the best mobility with Stelara. I have been on it for a year.

Because of the elevated glucose, the Doctor put me on Januvia. Januvia passes sugar out the kidney. Not a smart choice for someone with kidney disease. He finally changed it and I am on a new drug which is not really working and my A1c has risen again. I got a note from the nurse from my doctor’s office saying, “the Doctor wants you to watch your diet. Eat less carbs and sugar.” I was so pissed and will say something when I see him.

I just went and had my blood tests done. I am in big trouble. My kidney function is now stage four CKD. There was a slight improvement since I retired, but not enough to put me back to stage 3. My blood pressure has been up and now I have awful cholesterol reading. It has jumped up 114 points in one year. My cholesterol has been normal most of my life.  Both the BP and cholesterol is due from the Stelara.  It is a known side effect.

So now what? I do not know. I see the doctor on Friday. I swear if he says it’s because I am fat I am going to walk out of the office. He usually is pretty good about things. I would have to be eating pure fat for that amount of increase. And, I don’t eat a lot of fat. I do not even eat meat. But I should not have to justify myself but I will be ashamed because that it the reaction I have. I will be made to be guilty of gluttony. Meanwhile, I have a situation that needs to be dealt with. When you have Factor V, the last thing you want is more reasons to have clots. And when you have high cholesterol, it also raises you blood glucose, which has been an issue with all the drugs I am on.

I feel out of control and I admit, very depressed. This was supposed to be a happy time for me since I retired. I will say that I am much more active than when I was working. I spend most days working on physical projects in the house. My mobility and stamina is much better.  I have noticed the difference. But I am scared that my recourse is to come off the Stelara, or take more drugs.  It is like being a prisoner in your own body.



Hatred: a Learned Behavior

Currently I am reading “Shrill”, a book by Lindy West. It is not for the easily offended reader. She is a comedian and is very funny. But she is also FAT. Lindy is a true Fat activist and writes for about the struggles she has. She deals with hate every day. But she wants to change the world and I think she has many valid points. She says, “Being fat is like walking around with a sandwich board that says, “HERE’S WHERE TO HURT ME!” That’s why reclaiming fatness— living visibly, declaring, “I’m fat and I am not ashamed”— is a social tool so revolutionary, so liberating, it saves lives.”

When I was growing up, bullying existed but it was not exonerated. Bullies were known. They were outcasts and shunned, unless you were one. As a child, you learned to fight back or suffer. Parents did not fight your fight for you. You could rat out a bully if you dared and they would be “in trouble,” which meant something in those days.

Today’s culture is very different. I blame the media who created movies like “Mean Girls.” Then we have TV shows like the “Biggest Loser” where they abused Fat people for entertainment. There was nothing real or entertaining about that show. There is one out there now called “My 600 Pound Life” about very large people who are suffering and struggling to just survive. There is nothing entertaining about witnessing suffering. But it creates absolution for the hatred of people of size and fosters bigotry.

Lindy talks about flying and the stigma attached to Fat people when they board an airplane. I have sat in seats that do not fit me. It is humiliating at best as well as painful. And my butt is not as big as a Kardashian. I love Lindy’s retort: “We don’t insist on a solution because it’s still culturally acceptable to be cruel to fat people. When even pointing out the problem— saying, “my body does not fit in these seats that I pay for”— returns nothing but abuse and scorn, how can we ever expect that problem to be addressed? The real issue here isn’t money, it’s bigotry. We don’t care about fat people because it is okay not to care about them, and we don’t take care of them because we think they don’t deserve care…..We don’t insist on a solution because it’s still culturally acceptable to be cruel to fat people.

We are not born hating people different from us. Babies do not see Fat people as a threat. They learn that from their parents. My parents hated Fat people and had no issues making hurtful comments my whole life. Their mothers hated Fat people too and passed that down. They had no reason to hate fat people. They also hated people of different religions and especially hated people of color. They had no tolerance for anyone different from them, actually. They were upper class snobs full of themselves. My siblings to some degree reflect the same thinking. I never did learn the behavior and was an outcast in my own family sphere. But I held true to my principals.

We live in a country where hatred, bigotry, misogynic behaviors are being tolerated and actually glorified by some. But we are starting to have people who are standing up and saying no more. We have to do this. The energy of hatred is toxic. We have to change what we teach our children. I am aghast at the comments I hear from young people that are vile and filled with prejudice of things and people they have no direct experience with. How is that possible? Because hatred is a learned behavior and we have to stop teaching and accepting it.

West, Lindy. Shrill: Notes from a Loud Woman (p. 148). Hachette Books. Kindle Edition.









Fat Hatred

This weekend celebrated the second Women’s March in Seneca Falls. There were over 10,000 people there to voice their concerns. Voicing concerns is everyone’s right in the USA. I support that right as a woman and as a blogger. I am not able to accept and even understand what gives people the right to go on to someone’s blog and write an evil and threatening message. It happens all the time and to totally innocuous blogs.

Blogging is the opportunity for the blogger-author to express their thoughts. It is therapeutic at times and it can be a gift of education or just simply an outlet for the blogger to write about their experiences. It is a wonderful outlet.

I follow several blogs. There is one I find at times quite humorous called Dancing with Fat by Ragen Chastain. She is a large size lady who writes, is a triathlete, and a dancer. She also is a motivational speaker who encourages people of all size to be the best that they are no matter what their size. She is a true hero for the thousands of people who let their size inhibit their lives.

There are many other activists who are trying to simply educate people about size discrimination. It is totally acceptable in our country if not encouraged to harass and bully people of size. I do not get it and never have. But I was astounded by the hatred these activists have had hurled at them on their websites and even face to face.

In Regen’s blog she talks about trolls. She actually created a website and posted some of the comments and her very funny and witty replies. The comments are graphic and threatening and just frightening. She has never hurt anyone or tried to change anyone. She is only offering a glimpse into her life with joy and support for others. Pardon the language of this, but this is an example: “cant we just kill the fat people and make cat food out of them? 99% of obese people are just stupid lazy ugly pieces of lard,fuck em”  Can you imagine how this makes me feel as a large person to be judge that I should be KILLED and made into cat food simply because I take a larger dress size? Of course the sentiment loses value in the quality of the rant… and we move on. But how horrible is it that this person is out there expressing that much hatred and violence to an innocent group of fat people. Really? There are a lot more worthy groups to hate if you got to hate.

I am so naïve even at this ripe old age. I never knew there was so much hatred against fat people. This hatred is a learned behavior because it is not embraced by everyone in the world. What difference is to anyone if a person is large or small as long as they are not hurting anyone? This issue is becoming more prevalent now because people are standing up and saying “STOP IT!” Count me in!

We would never tolerate this type of harassment and hatred towards people of color. But I lived with that hatred growing up and I still hear it whispered behind closed doors. The fact is now it is unacceptable to slur and insult people simply because they have different skin color. It was an arduous fight. I am not saying the fight is over either. But when I was a young child it was a segregated world and it was nationally acceptable. But no more. It gives me hope.

I am not going to go on a political rant here. It would be too easy. Change has to happen. We need to be aware of this hatred in order for it to change. People don’t like to get involved in controversy and we have become a nation of complacency, which is why we are where we are with the leaders we have.

My goal is to just point out something that many people might not even be aware of. Next time you sit next to a fat person, understand that they know when they are being ostracized. They can see the looks and feel the shame you want them to feel for just existing. In many cases, their size is their protection from the harm and hurt their life has been. Try to understand and not judge.



I was reading one of my favorite blogs the other day and I became outraged. It talks about how Google was putting information down about walking distance and calories when asked for directions. She felt this was fat shaming.  https://danceswithfat.wordpress.com/2017/10/28/google-cupcakes-and-terrible-ideas/

I do not necessarily agree that this was the best example of fat shaming. I actually think it is kind of nice information if you CAN walk.  The calorie indication is just part of the diet culture we live in. But there are other messages out there that are not only fat shaming, but blatant discrimination.

She mentions that in some places they have turned off the escalators so that people will use stairs. Swell. That is discrimination of people with disabilities whether they are small or large. I know plenty of people who cannot climb stairs or even worse, like in my situation, go down them. I can go up with a hand rail for support but coming down is not happening. My one ankle now goes completely out at any situation and makes me fall if I do not have something to grab. Imagine my luck on stairs.

What about wheelchair access? She was saying that they are putting up signs next to elevators to remind people to use the stairs because you burn more calories. Talk about rubbing it in the face of people who cannot make a choice. That is not fat shaming; it is just harassment of everyone who is disabled.

In other blogs she talks about the discrimination or fat shaming that occurs with large people getting medical treatment. She states one person she knew was denied health insurance because she was morbidly obese. (I hate that phrase with a passion) How is that not discrimination? How is telling employees that if you are over a certain body weight, you will have to pay more for your health coverage not discrimination and for that fact, legal? But places are doing it all over the country. My company almost went there.

We lump every large person into one category. FAT, LAZY, and UNRELIABLE. We are treated like liars all the time. (Yes, secretly I go home after work and stuff my face with ice cream and cake… and even if I did, what business is that of yours?) Doctors accuse of lying all the time. In my own experience, I was accused of gorging myself by my two doctors when I put on 17 pounds in 6 weeks. They were sure it was what I was eating. On my own, I stopped a medication I was put on and almost overnight, the weight disappeared. But neither would listen to me and I sat sobbing in their offices telling them how awful I felt since going on the medication. The medication also caused dyspnea, but they didn’t seem concerned and again said it was because I was fat. I did not have shortness of breath before or after. It was humiliating and hurtful and neither of them said anything afterwards when I proved it was the medication.

In this culture, large people are the remaining targets of the worse discrimination out there. We are outrage if someone is discriminated for color or race. They just sanctioned a baseball player for making slant eyes at an Asian pitcher. Bet if he called someone fat nothing would happen.

I can only speak for how this makes me feel. I see people’s expressions. I hear their words of disapproval, and I feel the ostracization all the time. I hear all the girls at work constantly talking about their suffering when it comes to dieting and they wear it like a badge of honor. “OH, I can’t eat that” or “I would love a cookie, but no…”

But this pisses me off more than anything: I eat my lunch at my desk while I am working. And I do this because I do not want to stop working, but more because I do not want to be judged. I eat the same thing every day. I have a bag of chopped veggies, an English muffin with mayo and 2 slices of “just turkey” (has no chemicals in it). I leave the veggies out to munch on. Just last week, someone came to my desk and had the gall to say, “OH my, what a healthy lunch.”  I said, “Yes, surprise! Fat people eat better than most. Why are you shocked?”  Oh did she do a back pedal. This is not the first time either. I actually have had people just come into my old office cubby when I was eating a salad and start lecturing me on diets.

The image I used for this post is what as me all riled up. “Fat ballerina.” This is inexcusable. Dress up like a fat person and make fun of them all night. Yes indeedy. Be the star of your party by humiliating people who often have no choice of their situation or health. Next we should make a costume to mock developmentally disabled folks and call it “Retard.” Or how about a costume that makes you look like you have a prosthesis and we can call that one “Gimp”?  Think I am going over board? Try walking around in a real fat suit and see how it feels.



Don’t take this personally

“You’re too sensitive.” “I meant this is a good way.” And my favorite: Don’t take this personally.” Everyone time someone says those things; I know it is going to be a dagger in my soul. I am too sensitive. I will take it badly. And I most definitely will take it personally. Because that is the honest intent. Prefacing statements with “honestly” or to “tell the truth” does not excuse the fact that you are about to be mean. “It’s for your own good” never really is. It’s about you feeling superior to me.

Being an empath is not a pleasure. I see right through most people’s crap in a heartbeat. It does not mean that I can shield myself from the hurt. I never learned that part of survival. Because of that, I am very vulnerable to insults, even if they are shrouded in good intentions. They never really are good intentions.

When you are a large woman, you are a walking target for these kinds of insults. People feel so justified to say, “You would be so pretty if…..” “or you have a beautiful face….” People tell you how much better your life would be if only you could be more like them with statements like: “you should run with me some morning.” Oh Honey, if you really knew me, you would know I can hardly walk some mornings due to psoriatic arthritis. But you don’t really see me, so thanks but no thanks.

These comments do more than just hurt me. They trigger me. My family never lacked in cruel comments. It was a sport to see how clever someone could insult another. I was an enigma in the sense I was the only woman in my family who was large. I mean I am the tallest by 5 to 7 inches, I wore a much larger size (my Mom was a zero to 3) and I had boobs. I spent my childhood listening to “how much better I would be if I only…” This is emotional abuse by the way. I was deprived of treats, often subjected to ridiculous diets like green beans and Jello and constantly harangued about my shape.

[And this is how just writing about my childhood trigger me to justify it. I realized this when I went back to reread what I wrote:] My mom was in charge of the food in the house and meals were excessively high in carbs and fat. There was always soda and cookies available because the other siblings could gorge on them. They were thin. I was an extremely active child and teen often spending the day swimming or riding a bike for miles. I was not allowed to sit around and watch TV or even read. As a younger woman, I was very active. I only slowed down because of the PsA and if I did not have it, I would still be playing tennis and other activities as much as I could.

My family’s constant barrage of self-improvement comments were actually telling me how I failed. There was little said to counter the demeaning of the words. It successfully made me feel like a failure and that was the intent. I know this now, but it scarred me. So now when people make their veiled comments, I hear the disappointment in my mother and father and it brings me back to that time. When you have PTSD, it does not take much to trigger you.

When you grow up with a sense of failure, you have two choices: over achieve or lie down and whither. I overachieved. My success had not dampened the hurt I feel when someone is critical. I am so sensitive, that a look can set me off. I feel people’s disdain of me even if they think they are hiding it. I read people very clearly. It does not matter who or what the relationship. It does not matter if I love or hate the person. Their intent comes beaming through.

Next time you go to make a comment, try to remember that a large person already knows they are large. Chances are they have spent a lifetime trying to meet other’s expectations and have failed. They may not be strong, and your words will haunt them for days. You have no right to demean someone ever. If you think you are helping them, you are not. Get off your white horse and stop being so pompous. Learn that “right reflexing” (the attempt to take charge of someone else’s change process) does not motivate anyone to change. Understand your motive before you speak. Send love, not hurt.



Fat Shaming

There is a very strong movement out there that I think is wonderful and way overdue. It seems to be popping up everywhere on the Intranet. There are many web groups that are devoted to the principals of stopping Fat Shaming and Body Acceptance. It’s about time.

See, it isn’t just about just other people accepting a person of size. It is about how you accept yourself and that is the basic principal for most of these groups. They know to change society’s  point of view will include fighting the fashion and medical-insurance worlds. They have to take on the giant media world. But at least they are starting the awareness. This will start with the individual saying “no more guilt and shame.”

This is not about  eating whatever you want. It is about being healthy at any weight. And the first thing that most people say is that if you are overweight you are not healthy. That is not true. The degree of being overweight and the abilities of the person are factors that need to be included in the overall health of a person. But to judge someone by a statistic is unfair and bias. It is how the insurance companies do it. It is how the medical profession where trained. And it is darn near impossible to change those minds.

Most of these programs work with the primary concept that people have to accept and love who they are. If you have self-compassion for yourself, you will naturally take care of yourself. Taking care of you includes eating better. It means dealing timely with health issues. It means getting the care that you need when you need it. It means dealing with stress. It means, and I think this is the most important concept, not letting people make you feel guilty and bad about being you. Do not let people define who you are.

Living in a world where being Fat has only a negative connotation is difficult. You are discriminated, ridiculed and harassed. Up to now, it has been generally accepted that it is ok to pick on the fat person. We see it in our media. Look at the characters who are the bunglers and pathetic ones in movies and TV. They are fat. Fat equals dumb.

Fat shamming will probably never go away. But I am glad that it has a foothold and people are becoming more aware. I think of all the young girls who put themselves through torture to starve themselves and end up with an eating disorder. Being overweight can be an eating disorder too, but you do not see the same empathy for someone who struggles with compulsive eating. I think about how many women think they are grossly overweight and therefore an abomination and they really are not. What do you think would happen if these women were not riddled with guilt and shame?

Getting rid of the guilt and shame to me is the most important part about this new movement. Women are easily boxed in by trying to meet society’s rules. If people are free of guilt and shame, they are able to dream and be creative and do amazing things. I know many women I work with who are so focused on everything they put in their mouths. They count calories or points and perseverate on every morsel and are bound up with such guilt that it limits them to enjoy life. There is little joy for those who are so worried about every point and calorie. Enjoying one piece of cake does not make you a horrible person. It is like being tied to bully. And organizations like Weight Watchers feed that mentality. I know this to be true as I have done WW many times only to end up frustrated and shamed. Nothing says guilt like getting on a scale in front of everyone in a group, being weighed and although they don’t say it out loud…. Failing because you did not lose a pound. OMG, I think of the subjective oppression that brought on.

Being free of food shame is very liberating. And if you really listen to your body, you will eat what you need and when you need to. But that is a hard process to learn in our world. That’s another blog.

Pay attention to this change. It is everywhere. It makes me hopeful for the next generations. It has to be a better world where every individual is important and is allowed to be free from shame and guilt. Join in this fight for freedom of guilt. A healthy body can be at any size.

Here are a couple of organization’s I am involved with:







Let there be cake!

I saw the bright reflection from down the hall. The light glimmered off the protective covering as my boss walked towards me. It was time for our weekly staff meeting and we met and turned to enter the room together. It was like walking with one of the three kings from the Orient to present the holy child with frankincense or myrrh. She had the gift of the Magi. She had birthday cake.

If I was abandoned on a dessert island and could only have one food, it would be chocolate birthday cake covered in butter cream frosting with tons of roses and flowers. And there is one store here that makes the best. My boss was carrying one of those exact cakes into our meeting as a surprise for one of staff. I had to decide at that point if it was the best day or the worst.

I have been going through an on-line course call “Be Nourished.” It is a series of six modules that offer lessons and inspiration to learn to become an intuitive eater. No diet, no starvation and definitely no deprivation. It takes practice and training to quiet the mind and really feel what the body is saying. Instead of eating from emotion, you eat when and what your body says it wants. Believe it or not, when you really pay attention, the body does not crave sugar. I was surprised to see how easy that has been. I also noticed that I do not crave carbs and salty things as much.

If you think by “letting go” there would be the urge to eat everything under the sun. For some, I guess that happens. But then, it is in response to an emotion and not the actual response to hunger. I discovered I eat when I am bored. I eat out of habit. Its noon, it is time for lunch. But now I wait until I am hungry. It is weird also to actually feel hunger. And then I listen to what my body says it wants. I bring my lunch but at dinner, the choice often is salad automatically.

The other part of intuitive eating is knowing when your full. There are studies which say often obese people do not sense full. I stop for the most part when I am full or just know to stop. Sometimes the guilt of throwing food out makes me push past the point where I could stop.

I sat through the meeting eyeing with delight and patience for them to cut the cake. But when they did, I passed on it. It was only 10:00 am and I truly was not in the mood. I did not want the sugar rush that early on in the day only to crash later. I knew the cake would be left in our shared area and others would attack it later as was my plan. But I ate my lunch first. I was not hungry after that, but images of butter cream rosettes danced in my brain. Finally, I gave in and went to cut a chunk for myself. I included a piece of the biggest pink rose. It was only about an inch and a half square piece. I had to carry it back to my office. I knew if someone passed me in the hall I would get “the look.”

I actually set it behind me on a cabinet for a bit and again reassessed how I felt. The biggest hurdle was the guilt. It was so strong. I thought of all the things I have been doing for myself. This was a blatant disrespectful act and lacked self-compassion, I thought.  I spun my chair around to gaze at the loveliness of the rose which just happened to be my favorite color. I spun back to my computer to think how I would feel with all that sugar pulsing through my body after so long a withdrawal from most sugary things. I could feel the cake behind me. Its chocolate goodness filled the air and the pure white of the frosting sat waiting to be enjoyed. I spun around and with fork in hand, slowly and with purpose devoured the piece. I tasted every grain of sugar, every ounce of butter, every essence of dark cocoa.

It was done.

Was it worth you ask….. Hell, Yeah!