A journal of healing

Posts tagged ‘self-compasssion’

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!

Frustrations

I was going to add an image here, but after looking through clip art I was so offended and insulted that I decided I would not put a picture in. Google images for obesity and take a look at the insulting and sarcastic images out there.

A two second look was all he gave it. A brief glimpse into the Internet and he declared his ruling. “It is not a reported side effect.” He had gone to the manufacturer’s website and true, it is not listed. I had scoured the internet for information before taking the drug. But here I was, three months after starting this new shot and 16 pounds heavier. He deduced it must be due to my consumption. I looked at him through tears and said, “Do you know how much food I would have to eat to gain that much weight that quickly?” He could not respond. I sat there, tears streaming down my face and said, “You are calling me a liar.”

Here I was again with a follow up visit to the rheumatologist office. At the December visit, I was having such a terrible reaction to the medication, Humira, that they thought I had damaged my heart. I was sent through many tests and had to visit a cardiologist. The results of the tests were my heart was fine and strong. I was taken off the medication and improved immediately. But there was an impact on my kidney function again. Once off the drug, I immediately started to take the few pounds off I had put on.

One month later, in January, I was on a new shot called Stelara. This shot is outrageously expensive and not everyone is approved for it. I was only because there was not much left for me to take. I have taken within the last three years Enbrel, Simponi, Cimzia, Avara, Otezla, and Humira. When I first went on medication thirteen years ago, I was put on methotrexate (MTX) and prednisone. Six months in I was peeing blood. I told my doctors who said it was because I was on Coumadin. I stayed on this drug for a year and a half. My glucose A1C went from 5.6 to 13. My blood pressure went up and I gain thirty pounds.

They took me off the drug and sent me to a specialist because my kidneys were damaged. One kidney seemed to not be working at all. The nephrologist intern said to lose weight. That was the extent of the visit. The damage was there and there was nothing they were going to do. My kidney did get better over time and my output levels improved. I also dropped the weight and then some and lowered my glucose levels too. It never returned to the 5.6 but stayed around 6, which at that time was ok.

Then, I started having kidney stones. I passed and collect over 32 stones. They were big and they were small. Some hurt terribly, others not so much. I never went into the hospital and I probably should have for the last one back in 2015. It was so big that I struggled to pass it. The labs results showed dangerous levels of uric acid in my blood plus other indicators that the kidney was not working. But no one did anything. I even showed the stone to my doctor after I birthed it and he cringed. My kidney labs never went back to normal. But I also have not passed stones because he put me on allopurinol. Kidney issues are now commonly reported now for people with psoriasis and psoriatic arthritis and they are beginning to do research on it. But no one has admitted that the medication exacerbated this situation or this correlation.

Here I was again, sitting in a doctor’s office being told to go on Weight Watchers. I have been on WW so many times I know the points for just about everything I eat. Last time on WW, I gained weight. Then the discussion about bariatric surgery came up again. I just gave up and sat there crying. I am so weary of all this. I told him I put on 3.4 pounds from the reading I did yesterday in the morning to checking the scale at night when I got home from work. It went back down the next morning but was about a ½ a pound more from the previous days. I have watched in horror this slow creeping. And yet, I have done everything I can to be careful in my consumption. Nothing changes with me in my diet. I eat the same breakfast and lunch as I have for years. Dinner is always chicken and veggies or salad most week days. I have cut out salty things including my beloved cheese.

On top of the weight, my blood pressure sored to dangerous levels right after the first shot. This is a common side effect of the shot and reported in the material. My kidney output again indicated there was a serious issue. My labs were terrible and the levels indicated were now in stage four CKD. My PCP was so concerned he called me in to the office. Again, he gave me medication for the BP. But again, the weight issue was my fault. After a week on this new BP medication, my once skinny ankles looked like Barney Rubble’s. The BP came down a bit but not enough. I was so puffed out that there were nights by feet hurt. I finally said enough of this and he put me on something else. Too soon to say what will be that outcome.

I will admit I am terribly afraid. The weight issue is such a horrible thing for me. Trying to convince people that I do not eat what they think I do is a never ending battle for me. Both doctors have recommended bariatric surgery and both doctors admit it would be very high risk for me. No one sees my health issues past the fat. I am not a person; I am a morbidly obese non-compliant patient.

I went to the patient portals for people with PsA and Psoriasis. In less than an hour, I had four pages of patient’s quotes who reported large weight gain on Stelara. It’s out there. I am not alone. And the frustration is not mine alone either.

And then I got it. The biggest selling point of Otezla is that people lose weight on it. It is true documented fact that you will lose weight on it. It is from being so sick. Those who lose weight reported diarrhea, nausea and other gastric issues. I was on it for a short time and it made me terribly sick. I could not walk straight. I felt like I was falling over all the time. It was like living with the worse hangover. It did nothing for my PsA or P.

This Stelara is a fairly new drug. It is expensive. It costs over $20,000.00 a shot. That is why most people do not get it as insurance companies do not want to pay that. It IS amazing. My psoriasis is almost gone. My ability to move is much improved. My pain levels have not been this low in years. I am grateful for this. But would people even try it if they knew there was a good probability they would gain weight on it? No, they won’t because being fat in America is the worst thing possibly you can have wrong with you.

I read somewhere that people would rather face debilitating depression and face suicide than take medication that would help, but had the side effect of significant weight gain.

I write this for people who have medical issues that may be similar in hope there is some comfort to know it is not just you. I found over fifty people who are on the same medication as I who took the time to write about it in post on a patient board somewhere. It is a small percentage of users? I do not know but I have to think it is more prevalent than that because not many people use or will write on these patient boards. Does it matter? Yes, because if we do not advocate for better treatment we will become slaves to drug companies selling poison. Doctors need to be aware that not all obesity is caused by consumption. I will probably never in my life be able to prove that. But I am going to try.

How does that look?

This week and a half has been crazy. A week ago Wednesday we had a windstorm of epic proportions. Then this past week, on Tuesday and Wednesday, we received almost three feet of snow with more winds. They did not call it a blizzard, but it sure looked like one.

I do not like to drive in snow, especially blowing snow. I knew the storm was coming. We all did. I prepared. I moved all the classes, prepared my instructors and staff and told them to be safe and stay at home. I and my salaried staff all have access to the work systems from our home computers. I planned on working at home. I am actually very productive at home.

Wednesday morning, I get an email from my boss that if I am staying at home I must take PTO and so must my staff. Her main concern: How did it look?  Four people on the HR team came in, including her, but no one in Education did. How did that look? She said since I was a director, I should have come in because it looks better.

I replied, as a director, I executed an emergency plan that kept people safe. I had spent Monday rescheduling all the Tuesday and Wednesday classes, in case. I told my staff to bring work home in case. They would have been productive at home, as I trust them. I said I am not crossed trained to do anything else at the office. I am not on the Emergency Planning Committee, I cannot triage, and I am not in any manner essential to operations. I cannot even answer the switch board. I asked her, what would you have had me do if I did get in? Her reply only was to say it did not look good.

This is just one more stone in the bucket that makes me want to stop working. Those who came in are twenty and thirty years younger than me, including her. The three HR staff members do not have much in their PTO banks and did not want to waste it and one lives right around the corner from the office. This Momma don’t drive in blizzards anymore. Not for anyone. How would it look if I was somewhere in a ditch? I can’t walk for very long on flat dry land. Where am I going in a blizzard? I told her that from now on, I will take PTO when the weather is bad, so plan on it. I have enough PTO in my banks this year that I may lose it if I do not use it. That is what being faithful and not taking excessive time off does for you.

Maybe this is just her, but I have worked for other people where appearances are tantamount. It does not matter how good you are in your job, but how you make them look. This is not the first time with this boss that she was more worried about how she looked than being judicial. Our CEO is also very preoccupied with appearances. She enacted a dress code right out of the 70’s for in house staff.

I understand that health care providers need to be available and that part of the job is to be there in emergencies. But it was so bad that the visiting clinicians were told by the VP of Clinical to only make essential visits and to remain home….and work on audits. How does that work? The folks who could and should have reported were allowed to stay home and work. Supposedly he made the call before he checked with the CEO and VP of HR who should have made the call.

   Dad digging a poop spot

The medical center we are connected with sent an email saying essential staff only. That means staff who work in support areas such as HR and Ed were not to report. Our CEO over ruled that and said she was not calling an Essential Only Staff emergency. She was concerned more about the almighty dollar. She was also very upset because none of the switchboard operators came in. How did that look? One of the HR staff who used to answer the phones was in so she was sent down there. This is the gist of why everyone was so pissy.

We have triage nurses who are set up to answer incoming calls by switching over the system to their home phones. HELLO??? Why did they not do that? We do it every day from 5pm to 7 am. Pay them the frigging overtime.

My loyalty for this agency is dwindling rapidly. My desire to participate in crazy behavior in pursuit of the almighty dollar is gone. It is just not that important to me. I did the right thing and my team all agreed. They too were ordered to take PTO. I had gotten up at 5:30 on Wednesday and called my paraprofessional educator as we still had not formally cancelled a Health Aide training class. But we were prepared. We had warned them we may and would text them if we cancelled.  We texted everyone by 6:30 and they were grateful. They are not even employees and I offered a better situation for them. How does that look?

Just for an understanding of how bad it was out there, our governor called a State of Emergency for the whole state on Monday in preparation. By Tuesday, the county was under a travel ban and no unessential travel. All the malls, schools, and town and county offices were closed. The plows could not keep up. This picture below is my husband’s car. I could not have gotten out of the garage let alone the drive way. Our plow guy did not even come until almost 2PM.

But I shut off my computer. I did laundry and I actually sorted out my sock drawer. How does it look? It looks amazing.

Induced Depression

falls rainbow

Last night we watched a couple of movies, like we do every Saturday night through the “can’t sit outside” time of the year. I rent all kinds of movies. Some are surprisingly good and some are so bad, you feel like you have been slapped when they are over. I rarely buy into what the Academy has touted as the best of the best. My favorites are usually love stories that end well, or animated. Anything from Pixar is a winner in my books.

But the choices seem to have narrowed. I try not to rent very violent movies. The violence stays with me for days. Any movie that has animals dying is not good and especially if it is a dog.

This post is not really movie critique but a commentary on what we are doing to ourselves. Depression is contagious. Being sad is not a good place to be. But we have surrounded ourselves with a world of death and mayhem and turmoil. We call it entertainment. What are we exposing our children to?

I no longer watch TV. Not at all. I was too disturbed by it. Funny, because that was what I did for a living and that is what I taught. But it to me is no longer entertainment. It is abusive. It sets up a world of comparison that no one can live up to. And the last thing I want to watch is people struggling and call it entertainment. I believe it desensitizes people so they are no longer shocked or empathetic. It is just someone else’s problem. Much like how images of war are no longer considered disturbing.

But I do love the escape of a good movie. I can see the art in the scenes and the pathos of a good story. I still watch for technical merit as well as looking for the quality of the finished movie.  I also love a good laugh. Best movie I have seen for a really good laugh is BFG (BIG Friendly Giant). Any movie that has a fart in it is big with me.

Last night’s choice was Manchester by the Sea followed by Beauty and the Beast. OMG, I had horrible dreams all night and feel like I was run over. Manchester has to be one of the saddest and most tragic movies out there, but I do not mean that in a good way. The hopelessness and chronic depression the main character goes through was not entertaining. It was just tragic. The story was about life and was very real in its depiction, I will give it that. But if I had known what I was going to be getting myself into viewing this, I would have not.

But the real offense was the second movie we rented; Beauty and the Beast. This was not an animated movie although there was tons of CG and special effects; it was live actors. I will say this, it was beautiful. The scenery, back grounds, dresses and sets were amazing. But it was extremely violent and filled with animals being killed. It missed the boat as far as we were concerned. But the violence was over the top and I would never let a child see that movie. The voice over did not match the mouths and it was choppy and erratically edited. It was a disappointment and again, just violent.

Even something like Pet Stories was violent. Why?

People might say that all fairy tales are violent. True as that is, they are only as violent as the reader and/or listener can conjure up in their head. When we put the stories to film, we are subjected to the movie maker’s concepts of violence.

Growing up in the 50’s and 60’s, we had a different selection of entertainment than we have now. TV was not violent or sexual at all. It was entertainment. Some of the first movies I did see as a child were musicals. They were happy and bright. The first real exposure I had to a violent movie was Clockwork Orange and to this day I still hate it.

What are we doing to ourselves as a society? We know that negative bias is a real thing. Biologically, we are designed to accept negative input more so than positive. https://www.psychologytoday.com/articles/200306/our-brains-negative-bias.

Is it just me who feels a sense of loss from such constant negative bombardment? Am I just being overly sensitive? (see past blog) This is my opinion: I think truly that the media output is by design meant to create a society that can be controlled and manipulated into accepting darkness as way of being. The results are demonstrated in the amount of bullying and just nastiness we see in our lives from our adult relationships  and the behavior of our children. I don’t find it acceptable.

The Wall

reaaching
I have been accused of being a highly sensitive person. It is not a compliment. It means I react to things that others can let go. I feel too much. It is true and I have been this way my whole life. So maybe it’s just me, but the world lately seems to be angry and negative. It to me feels like what it must have felt like back in the late thirties, when Hitler was coming into fashion. I wasn’t there, so I am surmising. But whatever is going on right now is not pleasant.
In my own corner of the world, I see shorter tempers and more infighting. I see separation of thoughts about the state of the country. It is so divided, and I do not think that is totally bad. But how people are coping is with anger and supremacy. “It’s my way or the highway.”

I do not want to get too political, but it is hard to have a discussion about tempers without factoring in the current state of affairs in the white house. The current regime is causing great consternation to many folks, me included. And again, not getting political, it is about the treatment of people from the top down. All the inroads we made in the past fifty years seem to be slipping back into the abyss of Bubbahood. Discrimination, ethnic and race issues, and the general treatment of women as whole has taken a downward turn.

For example, Trump’s public treatment of his wife speaks volumes. He left her standing there multiple times during the Inauguration. He sharply spoke to her like a child. I said something about it to my husband and he said I was making too much out of nothing. Two days later, he pulled a similar stunt at a restaurant with me. He loves Trump. I realized that the Bubbahood is how he got elected. They will never see that treating women like an object, disrespecting and publically humiliating her is a big deal. And this will carry forth into the world of work and other areas, if given a chance to get a foothold. Think I am overreacting? Take a look at the legislation Trump signed about withholding money for organizations who even SPEAK about abortions. Where does the Bubbahood get the right to dictate what a female does to her body? Don’t get me started.

stone goddesses

It’s like the world has gone mad with hatred. We are going to build a wall to keep Mexicans out? Can there be dumber idea out there? And the cost; 12 to 15 BILIION dollars? How about we take that money and get rid of the donut hole in Medicare where millions of senior citizens get every year? If you do not know what that is, it is a yearly situation where if your prescription medicine gets to a certain dollar amount, you have to pay full shot for it. And for the geriatric set, getting there is very easy as many older folks have multiple heath issues all requiring medication. Take a look at the cost of diabetic supplies alone. And every year, more people get diagnosed with diabetes. (Mind you, they keep lowering the level of what dictates being diabetic and they will keep doing that as diabetes is big money.) This donut hole lasts until you pay almost $4900.00 out of your own pocket…every year. Folks spend their life having money taken out of their paycheck for SSI and Medicare, which shock upon shock, you also pay for Medicare premiums in retirement, it is not paid for….. only to get hit up for this stupid donut hole. It’s when people start making decisions about whether to eat or get their medicine.  $4900.00 may not seem like a lot, but when your annual SSI income is only $11000.00, it’s everything. But… we are going to have a wall.

Just try arguing that with someone who is a Trump supporter and you see the power of hatred and the Bubbahood come forth. They really believe it will stop illegals. Really? Ever hear of planes? Who is going to watch this stupid wall to keep people from crawling over or under it? Did we not learn anything from the Berlin wall? What about Canada? Do you know how many drug dealers import their products across the border from Canada? There is a huge illegal Asian influx as well. Maybe we should build a wall there too? There are places in NY and Vermont where I have stood in both countries at the same time. Take a look at the 1000 Islands and the St. Lawrence and tell how that would look with a big wall right down the middle.

sunset view

In my own work world, the State showed up on Monday to do a survey. A survey is a loose term for investigation. They are looking for errors, misdeeds, poor decisions, bad documentation and places to recoup money. This is our government at its best. It says, go do your job, but we are going to come after you and often to catch your errors and penalize you. Yes, there is a penalty for errors and they now can demand payment for them. Smart: hit an industry that is losing money daily due to government regulations and then make them pay more. If we have enough, they can shut us down, or take over the agency. I doubt we are that bad, but at one time, the agency was. But it creates an atmosphere of finger pointing and accusations. And yes, I get called out with “where and how was this person trained?” I have to demonstrate compliance. We have required mandated training and it better be documented. I spend countless hours retrieving this verification and so I was not worried when I had to pull fifteen people’s training documentation. But it sets up anxiety. This state survey was on the horizon and promised for a later time frame this year. Something triggered them coming earlier. But for the past year, the threat has been held over everyone’s head. We will find out next week how we did.

side 5-15

So it is at my work, it is out in the small community I live in and it is global. It is the little comments and attitudes that seem more negative. Being in public is abrasive. Driving is defensive. People are suspicious of each other. And it seems to me that everyone thinks that this is ok. It is acceptable to be rude and caustic; under the concept of being “real”. I like people to be honest, but being rude is demonstrating a lack of compassion and empathy for your fellow earthlings. It is Bubbahood.

And yes, this all really bothers me. I feel the energy. Too me, it feels like the air is full of steel wool. I come home worn out and used up. I spend the day putting out fires and calming troubled waters. I do not watch TV, but I like to look at Facebook at night. I see the infighting there. I argue with my husband and we have had screaming matches about Trump. We could not be further apart on the man and his government. There seems to be no escape, no island of peace. I keep holding on that soon, the birds will return and my oasis of a garden will return. Oh, and yes, I have a wall around it.

Fighting for my wellness

rolling fog

I am writing this morning for those who suffer with a chronic illness, especially one that is not widely known by lay people and the medical field. Psoriatic Arthritis is a crippling auto-immune disease that unfortunately I have. But that is not what this blog is about. It’s about advocating for yourself and you wellness, whatever the illness is. The fog is very heavy this morning outside and the grey engulfs the house like a wet shroud. It is peaceful but it reminds me of the travels I have had lately with the medical world trying to figure out what was going on with me. It is like traversing through a fog. I hope that someone who needs to know they are not alone will find solace in my words and the strength to fight on.

When I was first afflicted with this disease, no one would believe it was anything more than me being fat. I had very bad pain in my feet, lower back, and sometimes other joints. I played tennis at the time three times a week at a tournament level. It was nothing for a match to go three or more hours. Most times I would not hurt until afterwards, but then I started having back pain before the game. Stretching helped, but not much. My energy level also started to wane and simple tasks around my home would wear me out. After my divorce, the disease bloomed full on. The stress exacerbated everything along with another medical emergency. I can say that I went from occasional pain to constant in very short order. But no one would listen and the medical advice I got was to lose weight.

Funny thing, I did drop almost 35 pounds when I had the medical emergency but the disease still happened. I had recently switched to a new doctor after the one I had almost killed me with not letting me have a medical procedure I needed. Finally, when my hands started to turn into claws, they tested me. No one also correlated the funny rash that was appearing all over my body. It itched and it was everywhere. I went to the dermatologist and even he did not know what it was at the time. They thought hives possibly brought on by the stress of my divorce and move.

A year later, after the tests, the answer was psoriatic arthritis. The rash was a different form of psoriasis that did not present in the normal way of the white crusty patches. I ended up with that much later on in the disease progression. I had to make my doctor look past the weight and see the human. She was great afterwards and when I said this about that, she listened. She actually escalated my visit to the rheumatologist so I could have the help I needed. I have been with him for ten years.

Psoriatic Arthritis was so new (in the scheme of things) that there was little in the way of medicine. I was put on methotrexate (MTX) and prednisone. I felt better but after less than a year in, my sugar readings, my A1C, was 13. I never had high sugar before. I also was peeing blood constantly. I was having labs done but no one said anything until my appointment with my reheumy. He said my kidney crashed. I was then sent on a rotation of seeing specialists. I saw the most egotistical endocrinologist who said lose weight and a nephrologist, who said lose weight and an urologist who found nothing. The tests were pervasive and inconclusive. My reheumy put me on Enbrel. Slowly all my labs returned back to normal. Except my kidney function never was perfect again. My A1c went back to 5.6 and remained there for many years until slowly there was a creeping of it rising.

After year seven, the Enbrel started to fail. I then was put through two years of hell. My PsA started to flare out of control. My P was not so bad but was coming back. The first drug I tried was Simponi. I stuck with that for six months. My A1C kept creeping up and the diarrhea was so prolific, it changed my life. I will not go into much, but I learned to be very empathetic with those who have Crohn’s or IBS. My blood pressure began to be out of control. I told my reheumy I wanted off and he put me on Cimzia. Within the second shot, my glucose readings were 350 to 400. This is the shot that truly wrecked my ability to synthesize sugar. I went off everything for about two months. My BP returned to 127 to 70 and my A1 c went back down to 6.5 -7. Meanwhile, my PsA was not medicated and kept getting worse. I was also beginning to get covered in pustular psoriasis.

I had to let the drugs get out of my system and then we tried Otezla. This was supposed to be magic. It would possibly help me to lose weight. This was the worse of the worse. I felt like I was going to fall over at any minute. Walking was pure torture. It made the pain worse and I bloomed psoriasis like it was spring and I was a fertile field. Next was leflunomide. There was not enough time in between to get the old stuff out of my system before we put something else in. Then in July we tried Humira. I had tried it once before for a very brief time and it did nothing. I was hoping it would work this time.

This fall, after taking two shots a month, I had been on Humira three months. I was a mess. I knew I could not go back to the reheumy for a bit as he was getting frustrated with my inability to tolerate the drugs he was prescribing. This was a mistake on my behalf. I need to fight for a change again. But I was afraid, so I stupidly kept my mouth shut. I started taking potassium for the horrific leg and foot cramps I was having. I had one at work that had me crying in my office. Fortunately, no one saw me. By November, I was taking Advil every morning. I then added another dose at night. It allowed me to walk, but I was the walking dead. I slept an hour at the most, having to get up to pee or because of the pain. This went on for over a month. NO sleep, constant pain, itching so bad and in places no one should suffer with. I was a mess.

I had labs done and my kidney function was horrible. I stopped the potassium. I was not taking that much anyways but my potassium was a little high. My hemoglobin and hematocrit was in the dumper. It had never been so low. I have My Chart and can see my lab results. The graphs showed major increases where I did not want and huge deficits in my blood. My PCP said very little when I went to see him other than I was fat.  He actually said I should have bariatric surgery. I sat in his office in tears and thought, holy crap, I am back to square one.

Fortunately, a week later,  I went to my reheumy who thought differently. I was having mild chest pains, dyspnea, and my systolic BP was very high. He ordered cardiac tests immediately. I had an EKG, and Echo and a nuclear stress test. He said to stop the Humira and no Advil. I spent the holiday weeks in stress, in the hospital having tests and miserable. I had no strength, no energy, I could not walk, and I could not sleep. My skin was covered, my hair and scalp was awful, and I was crying every five minutes.

It is now about a month since my last shot. My skin is clearing. I have some energy and I can sleep much better. The itching was not from the P but from the Humira. I was having a very bad reaction to it. I went back to the PCP and made him pay attention to the blood work. He finally agreed that the issues, the elevated sugar and BP was from the drug, Humira. He said he thought so before, but he did not prescribe it. No, instead you just called me fat. I told him I was pissed but I did look into the bariatric surgery. I asked him if he knew that if you lose a lot of weight, and your skin sags, that they have to do more surgery and it is not covered under insurance. He smiled a sheepish grin and said yes, he knew. I asked if he knew the level of threat of that surgery for someone with a blood clot issue along with an impaired immune system, how prevalent sepsis was? Again, the sheepish grin…. Yes, he knew the risks but felt he had to suggest it. He has no idea how upset I was.

My BP has dropped forty points consistently. I bought BP meter for my home. My glucose is stable but still too high. The tests revealed that my heart muscle is healthy and strong. I told the cardiologist I am built and look like an OX! She laughed.  I had an ultrasound for the kidney and it too is clear. All of this horrific pain and suffering was from my not speaking up and getting off the Humira faster. I usually do a lot of research on each and every drug and vitamin I take. I did not check on Humira because I wanted to not be predisposed to the idea of side effects. This time I should have. There is clear clinical documentation of cardiac issues brought on by Humira. I was heading for a heart attack.

I am feeling so much better as the drug leaves my system. I just saw the PCP again because the blood work was still going down. He was concerned this time. He put me on iron and gave me a  B12 shot.  Finally.

My whole point of writing this long blog is for those who sit back and do not fight for the treatment you need. Everyone is different. I know many people who have issues with Enbrel. I had none for many years. Do not let the system kill you. If you something is not right, speak up to your Dr. They are not mind readers. If you say you feel like crap, explain it well so they can help. One thing I did not mention was I also requested lab work done monthly. I have to go anyways for my INR so I requested they add a CBC and other tests.  That was how I proved that there was a decline in my blood levels and a sharp decrease in kidney function indicating a problem. It was not enough to say I was tired and was peeing every two seconds. My reheumy added his tests and they indicated that my SED and CRP rates were extremely high indicating inflammation. My pain was truly getting worse. When you think about it, on average, a doctor has about twenty minutes to assess how things are (if you have a good doctor). Without your input, they have to go on what they know in general. Help them help you and do not worry about “what are they going to think?” They are going to think you are smart.