A journal of healing

Archive for the ‘body acceptance’ Category

A Pissy Situation part one

I have been putting this post off long enough. I wanted to tell a few people to their faces but that does not seem to be happening. I feel like I am about to burst and I need the release my blogging gives me. I have been writing about my life now for over six years and now it is time for me to write about my death. Yes, that is correct. I am coming into a phase that everyone eventually arrives at. It is all a matter of time. Mine has just been defined a little more accurately. This may seem dramatic, and it is. But I am not going to soften this because it will make it easier for others. Nope! This is about me, totally me and what I am feeling.

In 2006 I was diagnose with Psoriatic Arthritis (PsA) and Psoriasis (P). It took over two years for the diagnosis because I am fat. I went from someone who played tournament level tennis three times a week to someone whose hands were claws and could not walk. Everyone blamed the fat for the joint pain. Finally, when my hands curled up, I was sent for tests and to a rheumatologist. Oh boy, did I have inflammation. I did not develop the psoriasis like anyone else and so they misdiagnosed that as well. They said it was a form of hives and it was everywhere. Now, they know what my type of psoriasis I have.

Why did this happen? I truly believe the trauma of going through a life altering situation triggered it. I was going through a divorce after 27 years of a miserable marriage. I had to sell my house as part of the divorce and get my own place, which I did. But then I lost my job the day after I signed the mortgage. It was so terrifying for me. I only had the support of one or two good friends to get me through it. My social life had been based on my husband’s circle.

It was like a cascade of failing health thereafter. About a year after I moved in to my home, I had an episode where I might have had a mini stroke. I went to the hospital and they discovered five blood clots, including one very near my heart. I have written about this before so I won’t at this time. The diagnosis and the whole event probably saved me from the grave fifteen years ago. I have an inherited blood condition called Factor V Leiden. My blood clots too much. My father had it, his mother, and my brother has it. I was fine and have been on a blood thinner ever since. But this led to a gynecological issue which required more medical attention. But for over a year, I would bleed out during my monthly. I almost had to have a transfusion. All of this was over the course of two years.

Meanwhile, my body was revolting with inflammation. There is a strong correlation to stress and inflammation. During these years I met my now husband who moved in with his 13 year old daughter. We both went back to college and we were working a multitude of little jobs to get by. His daughter was not happy and we had to contend with her mother who would not stop interfering. We eventually shipped her off to her mother in California which was the right thing to do.

So back now to 2006: Once I was officially diagnosed with PsA and P, I was put on huge doses of methotrexate, prednisone, and Advil. About a year in, I started to have cranberry colored urine. The doctors said it was from the blood thinner. They did nothing and I stayed on the drugs. Meanwhile, I was putting on weight like crazy. Finally, a blood test revealed that my A1C was 13 and the other labs were indicating some kidney issues. They actually told me to diet. Really? I went from to low blood glucose with an A1C of 5-6 for most of the time since they tested me to 13 and its diet? I finally got to the rheumatologist who said looking at my labs, “did anyone tell you your kidneys crashed?”  They did not.

For the following years I was on just Enbrel for the PsA. They did nothing else. My glucose went back down although not where it was. Everything seemed to be ok. My physical ability was never the same however. Then I started passing kidney stones. I am talking rocks. I passed one so big it made my doctor cringe. I passed over 100 stones. I never went into the hospital. I just suffered on my own. They found five rather large ones in my right kidney and said there was nothing they could do. They were so large, they would never pass. They put me on Allopurinol finally only four years ago to help with the formation and it did help. But the damage was done.

It seems that these kidney issues are not uncommon with someone with PsA. The disease changes your blood chemistry to be more acidic, and uric acid is formed in great quantities. The stones I passed were all uric acid based. Think battery acid for piss. All of this can damage the kidney if left unchecked. I was unchecked for too long.

On top of that issue, about four years ago the Enbrel stopped working. I had to go on something new. I went through eight different highly potent biologicals in an attempt to improve my condition. They all had horrible side effects. The worse was chronic diarrhea. I had it so bad on one drug I could not drive to work without an issue. Work was only 20 minutes away. One morning I had to pull into a park and shit against a building. There was a Sherriff on the other side and if he had gotten out and walked around I would have been arrested. I exploded three times at work, once covering the bathroom that the CEO used. It was intolerable. They all made me sick and they did not help the PsA or P. I was getting covered with splotches and my hair was falling out. I lost  a lot of my mobility and started to need a cane.

In 2016, I was put on Humira. It did nothing for me and I had to use Advil to be able to walk. I was not taking big doses of Advil, but I should have been told to take none. The doctor knew I was taking it. The Humira gave me such issues that I had to see a cardiologist. They found nothing wrong and I finally demanded I stop the Humira. In 2017, I was put on an outrageously expensive shot called Stelara. My world changed immediately. The psoriasis was gone. The PsA was less and I felt like a human being again.

My labs were indicating things were not as rosy as I felt. First my A1C started to climb again. My blood pressure was getting very high. I put on weight, as I did with all the drugs. But the kidney function was declining. In September of 2017 my GFR (which is the measure of output the kidneys are functioning at) was down to 23. I had been there once before when I was passing a huge kidney stone and I got it back up to about 40. The GFR is saying that my kidneys were functioning at about 23%. Not good.

I decided I needed to change my life. I needed to destress. My job had become horrible and intolerable. I did not need it. We had been planning on my retiring anyways in another two years. I took the leap.

The next lab which was a month after I retired my GFR went up two points. I had made the right decision. But I felt like crap. I had little energy. I was short of breath on exertion, which was something I never had before. I was sleeping terribly and constantly tired. My PCP wanted me to see the nephrologist to see what she had to say. It took three months, but I finally got an appointment.

In the beginning of April my labs were God awful. I have enough medical background to know I was in deep doo doo. I had my first meltdown of what will be a series I am sure. My A1C had gone up a lot, and other readings indicated something was going on. Since I was put on the Stelara, my triglycerides were climbing and they were now three times what they were a year ago and at a dangerous level. But the worse part was my kidney GFR went back down 2 points.

I took my husband to the nephrologist appointment because I knew it was not going to be good. It was not good. I really like this doctor and had seen her way back in 2009 when I had my first issue. She told it like it is and what I am going to have to face. It was shocking to tell the truth and to face mortality is the worse feeling in the world.

This is the bottom line: I am facing dialysis. It may be in a year or less, or it may be two years. But it is going to have to happen as I will die otherwise. Once I am on dialysis, the prognosis is five to ten years. That is for someone who is healthy otherwise with no comorbidities. And yes I know, some people live for years and years on dialysis but guess what others don’t. One thing I am not tolerating is Pollyanna like remarks. I will go into more of all this in another post. Bottom line, my life has changed drastically and I have been told what my future holds.

Am I sad? Yes. Am I frightened? I am terrified. But I am going to fight like I have my whole life. Right now the goal is to preserve what kidney function I have. I am drinking sodium citrate twice a day to turn down the acid in my blood. I am taking more insulin. Because my kidneys aren’t functioning well, I am extremely anemic (which is why I am so friggin tired). I am on high doses of iron and vitamin D. I am trying as best as I can to be more physical. And I have had to change my diet drastically. I am going to see a renal dietician next week.

This is the most ironic part of all this: all these years I have been dieting on whole grains and tons of chicken and vegetables, I have been hurting my kidneys. I have to right now avoid potassium at all costs. Who knew my stables of broccoli, Brussel sprouts, darks greens and chicken were the worse things I could be consuming. In the effort to meet everyone else’s standard of looking appropriate, I was poisoning myself.  I will be going into this more as I learn about it. But am I angry about this…well yes I am.

In truth, I am very angry about the whole thing. I went to a renal class already as the nephrologist suggested it would be good for me to know what I am facing. She knows I already have done a lot of research on things but she wants me to get the truth, not the Internet truth. I am actually looking forward to seeing the dietician because for once, it won’t be about being fat. This is one thing I am going to write about because the discrimination of people of size is outrageous in the kidney world.

My life is altered completely. I am not taking crap from anyone. I am going to do what I want without guilt. I don’t think my husband fully understands, but we have talked about it and he is compassionate. That’s all I want right now as I lick my wounds and get my fierce up. I am glad I am retired as I can do as I can when I want. My future will be tethered to a machine, but for now, I am not. And I am going to treasure this time.

 

 

 

 

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Outrage

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:

https://benourished.org/

https://www.sizediversityandhealth.org/index.asp

 

 

 

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!

Death sentence

clown 2

Every year since I was very young, this time of year brings some form of bad illness or pain for me. It has been that way since I was 11 years old. I cannot sleep at night. I wake up and I have pain or an issue of some sort  and insomnia becomes the norm. I have written before about this.

I can remember as a young girl getting up in the dark and going downstairs to see the remains of my parents drinking all night. Their favorite glasses would have remains of watered down liquor and the ashtrays would be full. I remember one time when I had something wrong with my shoulder and could not raise my hand above my head. They thought it was bursitis, but I know now it was a Psoriatic Arthritis flare. Back then, they did not even know what Psoriatic Arthritis (PsA) is. Many medical providers still don’t.

I have been struggling the past two years trying to find the correct drug to manage my PsA symptoms. Currently I am on Humira, which is if nothing else, has not caused a lot of side effects like some of the other medicines I have been on. But it also is not working. My labs show my SED rate and other indicators show high amount of inflammation. I do not need any lab to tell me that. On top of the PsA, I have just plain old psoriasis. I have never had it as bad as some people get it until now.

I want people to understand. Psoriasis is an auto-immune disease that affects 7.5 million people or 3 % of the world. There is no cause and there is no cure. The skin becomes inflamed and the reaction varies from person to person. I had been lucky not to have many lesions. These are crusty little to large patches of bubbled up skin that itches and burns. The Humira is not working on the Psoriasis at all so now I am covered with very itchy skin and scalp. My legs are mess. A component of Psoriasis is Inverse Psoriasis which occurs in very sensitive places. I am also having an issue with Inverse but I will save the details. However, this is what is keeping me up all night. Anyone who has a mosquito bite can tell you how bad an itch in the middle of the night can be. Imagine that it not only itches very badly but burns.

On top of all this mess, I have been having terrible back pain on my left mid side. I know it is my kidney. I have at least three large stones in there the last time they looked, and they are so big they will not pass. When I lay down, they are pressing on my kidney. By an hour after I get up and have some water, I am ok. I wanted to know why now this was happening on top of my labs showing a change in my Creatinine and GFR.

My Doctor is a young Indian who is usually very patient and concerned about me. He subscribes usually to less is more when it comes to medicating. I have been seeing him for about five years. He does not like the fact that my rheumatologist has been changing my medication so much and does not really understand why we cannot find the right drug.

This visit was terrible. He told me that my kidney had not failed. Yes there had been a change in the creatinine but not that significant. (The lab reading was as high as it was when I struggled to pass a huge stone two years ago) He said the GFR was not a reliable indicator. (So why have the test?) My Systolic reading was forty points higher than normal for me but the diastolic was only 73, which is my normal. And he dismissed the back pain. He also told me to stop taking a potassium supplement I was using for the leg cramps.

What he did say was so painful I started to cry. He said I should go get bariatric surgery. In all the years I have seen him, he has never said this. My last doctor said it would be extremely dangerous for me to have the surgery because of my blood clotting issues. Factor V Leiden is an inherited disease and is passed down through families. It has nothing to do with my weight. He seemed short tempered as he spoke, like my visit was a bother.

He said my blood pressure is out of control. That’s not true, it has been steady and normal level for over a year and a half, since they took me off one shot (for PsA) that raised it to dangerous levels. He said my kidney issues are from being overweight. I said I have stones in there and this has not been a problem since May of 2014. He saw the stone I passed then and was amazed. He seemed to totally forget all that. I had to ask him to schedule me for an ultra sound to see what is going on, because this was NOT normal.

There was more he said that was harsh and I sat there with tears streaming down my face.

To me, he has sentenced me to death. I cannot express how much this affects me. I have a reaction to the concept of bariatric surgery that is so visceral it makes me physically ill. You know when something is very dangerous, and your gut tells you…”BE WARE”. That is what happens to me. When I was younger and able to exercise, the thought of going under the knife did not bother me. I wanted the help. But I was told I was not a candidate way back then. In those days, you had to go through hoops to get the surgery. In most cases, insurance did not cover it.

Now I am 62. I have a diagnosed blood condition and a chronic illness. Now they will cut you open if you simply ask. I argued back with the doctor that the long term success rate they are now finding is not great. This surgery is still new medicine. This was when he made a comment about dying sooner from being obese or having a longer life. I asked, “what if I die from the surgery?” His response was I was high risk, but he felt it would be worth it. REALLY????

Many people gain all the weight and then some back. But even if they do not, the other complications are huge. I do not know anyone who has had the surgery personally who said they would do it again. One friend had such terrible anemia, she had to have transfusions. And she is one who gained everything back. We let one employee go because she was out so much. They found another reason to terminate her, but she never recovered well from the surgery. She was not obese. She was plump and did it for cosmetic reasons. We just had one young employee who had two toddlers die a few months ago from the surgery. She became septic. She was 28. I know of someone locally who had a debilitating stroke from the surgery and is still not and never will be the same. One friend had it done two years ago and she has kept the weight off, but she looks 60 to her actual 40 years of age. She was much prettier heavy.

I could go on for hours about this. I have cried every night, and I am fighting them now. My point is that this is what people of size put up with all the time. I went to the doctor because I think I have a kidney stone trapped. The labs indicate it, my pain indicates it, and I needed professional help before it gets worse. My physical abilities are in the crapper right now because I am not properly medicated for the PsA. I can hardly walk some days. The pain level is extreme. My skin is on fire. I am not sleeping because of this. I cannot get into the rheumatologist until January 3rd.  He never has open appointments because rheumatologists are in such short supply. And my PCP is telling me to take a risk with my life and have a surgery that could very possibly kill me. ( and my gut says it will)

I do not think I have ever been as depressed as I am currently. I am not saying that being thinner would not resolve some things. I am not that stupid. I feel trapped in a world lacking of compassion, ignorant and insensitive, which is leaving me to suffer with vacillating issues of either continuing to suffer in pain or commit suicide, which is how I feel about the surgery.

 

 

“Living with where you are”

falls rainbow

Self-compassion teaches us that we need to come to a place of acceptance with whatever we have been given in life. It is the hardest thing to tackle and embrace. We use phrases like “if only” and “someday I will” to cope with that at this moment, this very present moment, I am not satisfied. Can we ever get to a state of total acceptance of what is, is just that?

There is always someone worse off than we are and then, they are people whose life seems totally charmed and conflict free. Deep down humans by nature are born to struggle and have conflict and it is not our place to measure and judge. But we do. We compare and emote how “no one knows what I struggle with.” That is a true statement. No one can know.

For example, pain is different for each being. We all have it and as we get older it is a constant companion. For me, there are times when it is overwhelming and there is no escape. This is what I have to deal with right now and sadly, it is not going to get better. Unless there is finally a miracle drug that works for me, I will progressively get worse. And the drugs I have tried have been a succession of making things worse, not better. This too is my present moment.

I am not dealing well with this, but I am trying to learn. One of the techniques I am learning is called “sitting with the pain”. Instead of ignoring it, I face it full on. I focus in my head the center of glow, the spot where the pain is the worse, and just sit with it. Sometimes it will calm down a bit to a dull shine instead of as spike of ice cold laser pain. Mediation also calms the beast.

But my life is not of a Buddhist monk. My life is filled with drama. I work fulltime in an angst filled profession where conflict and aggression are a daily part of my day. I have issues in my home life with family squabbles and pressure. This is a normal life and it is challenging.

What I am trying to learn is to be ok with everything. To accept this is what my life is and stop struggling. It is the struggle that exacerbates the pain. It makes sense. If someone ties you up, when you struggle against the restraints, it is painful. If you lay there and accept it, it’s not so painful.

But I am not one who quits either. I am not ready to lie down and give up and let this disease take over and make me bed ridden. I find myself very angry at times with my limitations. That anger has been getting worse because I am not at a place where I easily say, “Ok… that’s enough for today.” So I push myself too far and then end up in excruciating pain. And it is hard on my husband who often is the brunt of the anger. He is used to me doing everything. He sees the deterioration in my strength and stamina.  I think it frightens him. He is also used to be taken care of and he is not the best caregiver. That too is something that worries me.

Self-compassion teaches us to take care of us first. If we do not take care of ourselves, no one else really will and there you are. That is the heart of it. Self-compassion is not being selfish. It is learning to make the individual moments of your life the best they can be. No one else in the whole world can MAKE your life any better than you can for yourself. It is easy to preach these concepts. Much harder to live.