A journal of healing

Archive for the ‘Weight issues’ Category

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

 

 

 

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.

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.

 

 

 

 

 

Too sweet

rhoda 1 2015

I read a post on Facebook this week that made me think. It was the concept that someone’s mother had spent a lifetime devoted to her health with balanced eating and exercise and covering herself with SPF and clothing to protect her skin. And now she had multiple health issues including diabetes and skin cancer. The post encouraged you to enjoy life and not restrict yourself in anyway. I am paraphrasing. The first response to the post was to eat more bacon.

One of my battles has always around diabetes. Since I was in my early twenties, doctors have tested me for diabetes and been stumped that my levels were always low.

10 years ago, I was crippled up with Psoriatic Arthritis. PsA (Psoriatic Arthritis) can hit anyone at any time. The result was I was put on tons of medications to help bring the incredibly high inflammation down. It did, but not without major repercussions. One of the drugs they put me on was prednisone. It shot my A1C glucose levels to 13. The fix at that time was to put me on metformin, which eventually crashed my kidneys. One will never be better than working at 41%.

Azalea 2

I am able to see “My Chart” via the intranet going back to 2011. They put me on a biologic called Enbrel and I was on it for many years. There is a steady incline in my glucose levels for those years.  My weight has not fluctuated in reflection of the A1C levels. When the Enbrel failed (you build up an immunity to it and it stops working) they took me off of it, and my levels started to go back down. I was then put on another biological this early summer, and the levels start to creep up again. That drug caused my blood pressure to go through the roof and so I was taken off of it. And again, the A1C came down. My blood pressure has returned to 120/80.

Three months later, I was put on another drug called Cimzia. I had to give myself injections every two weeks in my gut. I knew after the second week of shots, I was in big trouble. The day after the last shots I decided to take my glucose reading at home and it was 365. I was terribly upset. I monitored the levels for the next weeks and the readings were all over the place with many over 350 but never came back down no matter what I did below 225. I had also gained 11 pounds in less than four weeks.

I stopped the shots. I stopped eating any and all sweets. This was horrible as it was the holidays and I normally bake and make candy. I cut out all bread. I did not eat much pasta and if I did I measured it. No cookies, no candy, no cakes. I lost the 11 pounds faster than it went on. But my glucose or sugars were still horribly high. I discovered that my readings in the morning were the highest. In the afternoon, I was coming down significantly. I had my labs taken and the A1C was 9.3. That was from 7.2 when I was coming off of the Enbrel earlier in the year.

Chives

I will be fighting this diabetic battle for the rest of my life. MY GP is hoping that by putting me on a small dose of Januvia at night, we can lower the morning readings and maybe kick-start my pancreas. He feels the drug(s) may have caused impaired glucose function and the pancreas stops working at night. If I stray from my restrictive diet, I see it immediately in the readings. It is not worth it. I thought I would drop a ton of weight. I am not eating any bread at all and very limited other carbs. I read labels for sugar and discovered that many low fat items have added sugar. For example I eat cottage cheese in the morning instead of no fat yogurt which has a ton of sugar and carbs. My weight has not changed since I loss the 11 pounds. BUT….I am not gaining either.

My point is that we cannot ignore our health like the before mentioned post. If you are over 60 and have no major illnesses, you are truly blessed. Doctors try to help with medicines and many patients will readily pop something in their mouth in order to remedy a malady. But too often drugs do not fix, they mask symptoms. One fix often causes another issue. I am resigned that there probably will be a diagnosis added that will include diabetes mellitus no matter what I do. I am going to fight what I can until my quality of life is such crap that I don’t care. But I am beginning to understand why old people can get crotchety!

 

Negativity bias and forgiveness

rain clouds'

The negativity bias[1] (also known as the negativity effect) refers to the notion that, even when of equal intensity, things of a more negative nature (e.g. unpleasant thoughts, emotions, or social interactions; harmful/traumatic events) have a greater effect on one’s psychological state and processes than do neutral or positive things.[2][3][4] In other words, something very positive will generally have less of an impact on a person’s behavior and cognition than something equally emotional but negative.

When asked to recall a recent emotional event, people tend to report negative events more often than they report positive events,[38] and this is thought to be because these negative memories are more salient than are the positive memories. http://en.wikipedia.org/wiki/Negativity_bias

If you were to ask fifty people in a group that is face to face, “are you happy?” most people will answer quickly that they are. But underneath, you will find that most people are not happy as happiness is one of those elusive feelings. We think we are happy, but if you start to think you are happy, these nasty little negative thoughts worm their way into your frame of reference. Couple that with the fact that most people have experience a disproportional amount of unpleasantness, and for some trauma, by the time they reach early adulthood. We are the walking wounded.

But not everyone is a negative-Nellie. I have been searching for so many answers in the last years. This includes my question of how is that some people just seem naturally happy? Are they oblivious to the world, which by the way is not very nice? My inquiry has led me to conclusion that it is a choice. It takes focus, patience and a lot of fortitude to have a quiet, calm and pleasant demeanor.

It also takes solitude and time to process input because negativity comes at you without your choice. We are flooded with input which is judgmental, sadistic and hateful. Information is disguised as humor is measured in the failure of others and how quick we are to place blame for their mistakes. In actuality, the humor comes from the relief that we are not the victim of the joke.

When I think of someone who is truly happy and content, the only people I think who really reach that state are people who are cloistered. It is easy to be happy and content when you live unaffected and separate yourself from the reality of the world. Peace comes from having all your needs being met in a secluded and secure environment. (This is one reason why recidivism is so high.)

I am striving to change many things in my life for the better. I know I do not have a lot of time to turn around sixty years. I also do not want to be one of those people who are so guru-like that they become annoying. I doubt my demeanor will ever reach that state. I have too much of a sense of humor not to see the idiocies of humans as amusing, including myself. I do not watch TV. I rarely listen or look at the news. I figure I surround myself with enough catastrophe proclaimers that if something really awful was coming they would tell me. Not that there would be much I could do about it, so why worry? I admit that I have isolated myself these past months. I even moved my office to a much more secluded area at work, which has been wonderful. I only see the people who have intent to see me. My other office was like being on display all the time. I stopped seeing anyone connected to “working on myself.” I found that it was like being tethered to my past and that I was never going to get on with it if I kept dragging up issues that I cannot change now. Besides, I am the only one who can really have an impact on my being.

Instead of being stuck in the past, I am trying to improve the future. I have ideas of what I would like to achieve in the future, but I am not putting a goal on them. I do not want to be intimidated by a point of measure. It sort of defeats the purpose. Instead, I think of it as a pathway, a direction to go in.

I am also including a huge amount of forgiveness in my work. I hold on to things. That is the basis for the negativity bias. We all automatically process in the negative domain. It takes time to reprogram our pathways to find alternative reactions. It is hard work.

An example of this is my health and weight issues. I am stuck in a cycle that I may never actually break. It is horrendous. (I know that is a big word) Seems that being fat creates being fat. There is a condition called metabolic syndrome which has many implications, but basically it is the construct that some people are predisposed to being fat. (I hate the word fat and it triggers all sort of things in me, btw) It also seems that there is a hormone called Adiponectin which is secreted in the blood which helps to regulate metabolism. However, the heavier you are, the more body fat you have, the less of this adiponectin you have circulating in your blood. Adiponectin has been postulated to play an important role in the modulation of glucose and lipid metabolism in insulin-sensitive tissues in both humans and animals. Decreased circulating adiponectin levels have been demonstrated in genetic and diet-induced murine models of obesity. http://care.diabetesjournals.org/content/26/8/2442.full

It seems that this also is a marker for inflammation. In other words, the less adiponectin flowing, the more inflammation you have. How this pans out is that you can eat the same amount of calories as a skinny person, and the heavy person will gain weight no matter what. Add to the fact that your body is coursing with inflammation, which also adds water weight and will stop anyone from moving and viola….you have the perfect storm.

Here is an example of how negativity bias works: I took a break from writing at this point. I started going down this path of “Gee, people who read this will think I am looking for an excuse…” and down the negative path I skipped. It took a pause to realize, “I don’t care. I am writing this piece in hopes someone else might find something good in it. The facts are I am facing a pretty big mountain (no pun intended) but it is totally my choice how and what I do. I know in my head that I am not going to give up, so it does not matter what people think. They already judge me for being fat so, who cares?”  The last line makes me smile and I move on…….

My point is that we all face hardships in our world. It is being human. How we face them is also our choice. Some call on a Deity for help, others look to science. I am somewhere in between. When I said I was working on forgiveness, it was not in relationship to others. It is totally in relationship to me. If I don’t forgive my own trespasses against myself, I will be permanently mired in the muck of life. Only through this freedom can I really forgive others.

 

 

 

The Wind beneath my ……

open roses

I am connected to a couple of organizations for Psoriasis and Psoriatic Arthritis. I was going through my emails tonight and there was a post that got my dander up…. And if you know anyone with Psoriasis, that is not a pleasant thing. They do not need help getting their dander up.

The article was talking about how there is a connection to the microbiome in our bodies and Psoriatic Arthritis (PsA). What this means is there is good bacterial in and on our bodies that do many things. When your system is sick, and you have a bacterial infection, you have too many of the bad ones. Other symptoms caused by bacteria out of whack are athlete’s feet and yeast infections, the plague of being a woman. Cellulitis is also a common and very prolific bacterial infection.

When people are often diagnosed for skin rashes, they think they are bacterial. Psoriasis is NOT bacterial. It is a reaction to the immune system being out of order and the skin over produces cells which build up plaques. That is what the rash is. I did not present “normally” with plaque but with little raised circular dotted configurations. It was several years before they figured out what my weird head to toe rash was.  (I was diagnosed with the PsA and they then connected the dots…so to speak.) They thought hives, and I was pretty sure that was it too. I have had hives off and on for my whole life. I was put on antibiotics. Guess what…that was the worst thing they could have done.

My immune system went absolutely haywire. I went through a series of strange symptoms that would show up in labs.  I would rush around being given all kinds of tests; all to find an anomaly, but then nothing would be done. I was tested for parathyroid issues, Hasimoto’s thyroid disease, saw all sort of endocrine doctors, saw nephrologists when my one kidney crashed, I became diabetic with an A1C of 13 from my normal 5. But no one could figure this skin thing. I would itch so much at night I would bleed. My sheets looked like I was attacked by a knife.

Finally, they tested for the RA markers and did a SED test. It was definite for PsA. Finally, (slap your head) the rash was figured out to be psoriasis. By that time, I had some hefty plaque on my scalp which confirmed it.

I have always had gut issues. I will try to not be too graphic. In my family, farting was an art. I was a Picasso. (Ok, I have to stop laughing at this) But in seriousness, this “ability” was not something I thought about much. I also have a loud gut. My bowel sounds do not need a stethoscope to be heard. Matter of fact, my dear friend wants to record them and make a record out of it. As I got older, my digestion became pretty erratic. I think it is one cause of my weight issues. Most often what comes in, goes out the same; no digestion. So…(in honor of the good Doc), I no longer practice my “art” for fear of a big oops, especially in public.

This article I was reading tonight shed light on something. The article talked about the gut having missing bacteria could be a factor in people having PsA. http://www.psoriasis.org/advance/features/microbiome-how-your-bacteria-affects-psoriasis-psoriatic-arthritis

I wanted to scream. NO SHIT!  Totally inappropriate, but truthful. I think about how my gut situation has steadily gotten worse over the years. Most times, I have to eat and have access to a facility pretty pronto. I have has some serious miscalculations (yes Doc, you are not alone) I will have a series of days like that and then just the opposite. Being blocked up is more painful I think. But I am 97% of the time in some form of discomfort all the time.

I was diagnosed with diverticulitis and was hospitalized for it five years ago. The course of meds included IV-antibiotics. My reaction was so bad, that they thought I had C-diff. It came back negative. But I was allergic to the Cipro and presented with real hives head to toe. I was also hospitalized with pancreatitis, hospitalized….given pain meds that locked me up tighter than Fort Knox. We had to blast. That was caused by an infected…. INFECTED gallbladder, which was removed and more drugs were given. Anyone catching on here????

So this article goes on about the investigation to the link of inflammation and the bacterial count in our system. It talks about probiotics.  On my GP’s recommendation, I went on probiotics. ONCE! My reaction was the worst case of almost not making it to the potty ever. Talk about a bowel cleansing. Yikes! I was sick as a dog for several days. I obviously stopped them. However, for the past two years, I have suffered from chronic issues that have ramped up to be like having Crohn’s. Last year, the Enbrel I had been on for eight years stopped working. My immune system had become “numb” to its affects. The result is my PsA is in full bloom and my gut is also blossoming and it ain’t pretty. I have days when the pain is so great and the reaction to food is so violent that it is amazing there is a bathroom left. You would think I would lose weight. But no; just the opposite. I put on thirteen pounds since last May. Fortunately, I have now lost 18 being on Weight Watchers. But it is extremely hard. For one thing, my ability to eat raw veggies is absolutely gone. I cannot tolerate carrots at all. Too many luncheons of salad and I am in extreme pain. I love veggies and I do not eat meat. But I cannot eat a lot of other things now. I also feel just terrible, tired, and irritable and gassy…. And not in that order.

But in the article at the end, it explains that the OTC, or everyday currently available probiotics are not the answer to the solving the connection with PsA. I will gladly volunteer to trial a product. The article leaves the possible cure for this terrible disease just hanging. It infuriates me. If they would spend one day with me in a small, warm room with no breeze…..that cure would be on the market pronto.

My mother and Weight Watchers

stone goddesses

I began Weight Watchers in January, 2015. I am strongly letting everyone know that it has nothing to do with being accepted or trying to meet anyone else’s expectations. It is about me getting my Psoriatic Arthritis under control, which it is not. I found out that inflammation changes the hormones and body chemistry making it very difficult to lose weight. In fact, most people gain. And I am like most.

In the last two years, I sat back and watched my weight steadily increase, some of it since last May when I had a horrible incident with a kidney stone that was 6mm big. It threw my chemistry completely off and within a month I had put on 8 pounds. I thought it was fluid, but it kept climbing higher, even after I passed the stone.

I did a lot of research, as I often do when I come up against something. I thought about bariatric surgery and discovered it should be called barbaric surgery. I asked around a lot and found from the mouths of people who had the surgery that it worked at first, but then MANY gained back some, if not all. And then on top of that heartbreak, they all had some form of  new issue such as diarrhea, hair loss, pain, mal-nutrition, anemia and the list went on. This to me was not an option for me because of the other complications with my blood clotting. I scratched it right off the list.

Then I looked into serious weight loss plans. Again, major rebound issues coupled with health problems. One program was good for small weight loss like 20 or so pounds, but very impossible for long term. The diet was 500 calories with multiple supplements. Really? How does that change a life for better?

So I turned back to old Faithful Weight Watchers (WW). This was my third go at it. First time I lost about 30 pounds but rebounded. Last time I gained right off the bat. This time…. well…. First my story. This is triggered by a friend’s blog I read tonight.

My weight issues began when I was very, very young. I do not remember ever not having a weight problem. I was pudgy as baby. I had severe food allergies and then that seem to not be a problem. There is one picture of me around three and I am not fat but I am not thin. I was tall though. A picture of me at five is that of a beach ball. It remains that way the rest of my life. But in truth, there is a picture I found of me standing up and I was around 13 or 14. I was fully developed, taller than any woman in my family and thick. Not fat, not thin. Shapely. I think at that time I was a size 14-16. The same size clothes now would be a 10-12. I had fabulous legs because I rode a bike everywhere and for miles. I walked, skated, swam all the time and danced. I had a bit of a gut compare to others, but I also had a shapely figure. But by then, I learned to hide, so to see a full shot of me was startling. I also realized I was not the beast my family had portrayed.

My mother, sister, aunt and both grandmothers were petite women. No one was over 5’1 and no one was over 120 pounds. In 6th grade, I was 5’5” and 117 pounds and in a DD bra. I was considered an aberration and chastised soundly by everyone. I can remember my aunt telling me to wear a girdle when I was 13.

My mother decided right about then she was going to “fix” me. She put me on this diet of green beans and Jello. I like both, but it was all I was allowed. I bought lunch at school and that was when you did not have choices, just one hot lunch for 25 cents. Our house was filled with candy and cookies. My father made his own root beer. We had store-bought bakery goodies and donuts every Sunday. Dinner was a roast or casserole with white bread, whole milk, fresh butter, and some dessert.  Crème sauces were big and on everything like fish, potatoes, veggies and meat. Veggies were lima beans, corn, peas and potatoes. I did not have a tossed salad until I was 16. Fruit was rare and often a “salad” was a canned pear on a leaf of lettuce with a glob of mayo and a maraschino cherry. Very chic! Very 50’s.

So her solution to my EATING problem was making me eat beans and Jello for a while. Now mind you, when I was younger, if you did not eat your dinner, you were severely punished. As children, we did not eat with the adults until we were older. On holidays we were allowed at the dinner table, but no talking and no messing around. Just eat and shut up.  I learned very early to eat everything. I was the kind of child who hated being scolded in any manner. Still don’t like it.

My mother could out eat us all. Her metabolism was not given to me. My siblings could eat and remained thin until much later in life. Not me. I ate what was on my plate. Rewards were foods like a special Dunkin donut covered in frosting. Birthday meals were fried chicken or lasagna. Candy lurked everywhere, dishes and bowls of the stuff. Fortunately for me, I am not a big fan of most hard candy, but in a pinch. My mother and father had buckets of Fanny Farmers’ assorted chocolates. There was always a full cookie jar on the counter in the kitchen.  Cheap soda was in the refrigerator and the famous root beer was shared on special occasions. Even alcohol was allowed early in life and on special occasions. I learned to love Cherry brandy by the time I was eight

The part as an adult that I have had to work on so very hard is to get my mother’s critical voice and disapproving looks out of my head. She would skew her face up and would look at me with such distain sometimes that it would hurt me to the core. Food was the enemy she deemed and would go on rampages to humiliate me or shame me into “doing something about my weight.”

Dinner often turned into a battlefield, especially if they had been drinking, which….. they did every night. Some nights, it was a race to be done eating to get away before something happened. Common tortures were a heavy knife handle to the elbow for having it on the table. We had these ball shaped salt shakers which my father would swipe up and pelt at you for some perceived misdoing. As time went on, and my siblings left to go to college or their own lives, I was the featured target. My father would take his dinner plate and fling it at the back of your head like a Frisbee. If he was really out of it, he would fling whatever he could reach.

But I always ate my dinner with my head down and quiet until I was around 15. Then I began to cook for myself and eat privately when I could. My parents often never got to dinner or it would be ten o’clock or so. They were so smashed it didn’t matter. My father munched on cheese and crackers and Mom smoked. But by this point in my life, my food issues were tightly engrained and my body was never going to be petite. NEVER. I ended up at 5’ 6’ inches with size 8 feet. (Mom’s were a size 5) My hip bones (pelvic area) were a good five inches wider than hers, and at her  4’9 inches, I towered over her.

But her voice never left me. is I will always see her dark hair framing her disapproving looks.

Fast forward to now, the present moment… well we will back up first. When I started working at my job there was this woman who I saw for the first time from the back and my heart skipped a beat. I swore it was my Mom.  Something about the way she held herself.  This woman and I do not get along. She is critical of everything and everyone. She has a frown on her face most of the time. She especially does not like me. I am in the position she held for ten years as head of Education. She is a nurse, I am not. This is my failing and she and a few others let me know at every opportunity they do not approve of me. It was very hard for me to get passed her and ignore her and her cryptic comments and her LOOK.

Now, present moment. What does any of this have to do with Weight Watchers? I was doing WW on line since January. But they offered a deal at work and were going to have meetings there. So I signed up and arrived early to the first meeting last week.  Who do you think walks in to join? Mind you, if she has ten pounds to lose, it is a lot. So there I am and all the old guilt, resentment, and uglies surfaced. I could barely speak in the meeting. We had to share why we were there and I wanted to stand up and scream because my mother was a mean bitch and so are you….(looking at this woman). But in a shaky voice I mumbled about being a big beautiful woman and that I was here to get healthier. I went home so upset I thought I should quit.

But I did not. Instead, I challenged her. She has four other participants and we have our own team from HR/ED. We will win. This week our team all had significant weight loss. I am doing really well, after a couple of stalls. This will happen and then I lose a few more. Right now I have lost 5% of my total body weight from where I started. It’s all numbers. I am still big. I am also still in pain. But I have not had a shot in two months. It will be interesting to see what happens once I get a shot and calm the inflammation. Right now I can barely walk so I am not exercising. But that will become necessary soon.

The team that loses the most total poundage gets a lunch provided by the other team. I will enjoy watching her serve me……hahahah. I keep holding on to that.