A journal of healing

Archive for the ‘obesity’ Category

Invisible

Penguins

I was very inspired by this post written by Christine Miserandino called the Spoon theory. I thought I would share the concept here and talk about what it is like to have an invisible disease. There are so many people with chronic illness out there.  This is  meant to be  an awareness campaign and to help others maybe understand what it is like.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

To paraphrase the Spoon theory: You are allotted everyday so much energy. Christine in an attempt to help a friend understand what her life is like with lupus tells her by using spoons to represent the amount of energy she has. Before she is out the door to work, she has used up so much energy in showering and dressing that she depletes the 12 spoons by half. She did not address that because of the pain you did not sleep well and so sometimes you do not even have 12 spoons to start with.

She talks about the choices that healthy people get to make about their day because they have unlimited energy. And when I typed the word healthy, I cringed because that is the first choice you lose when you are inflicted with one of the many invisible chronic illnesses that are out there. You do not choose to get this disease.  No one really knows why these chronic illnesses manifest. It can be genetic.. It is a crap shoot. You do not get to choose lupus, Psoriatic Arthritis, or MS and you often cannot prevent it.

Christine explains to her friend that she chooses garments she wears by whether or not she can button them. My choices have to include whether or not my skin is crawling and that the cloth will irritate me all day. Some days I want to get out of my skin, not just my clothes. I have no choice not to shower as I have something called inverse psoriasis, which burns like hell all day if I do not shower and apply medication. But I have to be careful because showering too much activates the regular psoriasis and makes it flare.

I have a friend who I have known for a few years who has chronic pain. She has been to different doctors and they cannot seem to find what is wrong. They are looking for a simple fix. She struggles to explain how one day how she can be really great and the next day feel like someone ran over her. Finally a doctor is going to test for an auto-immune disease and I wish her well.

I used to have days where I could rip through life, do everything I want and then pay for it later or the next day usually in staggering bone deep pain. No one would listen to me either. But they could only see that I was fat and that was the only disease they could see. Doctors are the first and sometime the hardest person to convince that there is something wrong. But be your own advocate. I kept a journal and my handwriting deteriorated so bad because I could not hold a pen. It was not until the progression of my Psoriatic Arthritis (PsA) got so bad that my toes and fingers started to curl up that she ran the SED rate test.

Then by running the required tests, and there are several because it is hard to diagnose, they believed me. Then they filled me with all kinds of drugs which have had dire consequences too.

I am now on a spiral of a pretty bad dive into my PsA. I was in remission for several years until the Enbrel I took stopped working. It took almost a year to realize what happened and to get in to see the rheumatologist. He changed my prescription to Simponi, which took another six months to get and then have an effect. In August, I had a reaction to the drug which raised my blood pressure to stroke level. I had to come off. It took another three months to get in and get a new prescription which I started in November. The Cimzia I took was horrible and raised my blood sugar to over 345 and I gained almost 10 pounds in a month. I am struggling now with getting the weight off and the blood glucose levels down. I am afraid this will make me have diabetes, which is something I have fought off for years. I have to wait until February before I can get in and see the Dr. again. The result is I am in full bore flare all the time. I cannot walk without limping and I have no energy at all. The pain I am in is constant.

I have only touched the tip of what it is like to have a chronic illness. I live with it. I have no choice. I make the best of it by being careful with what I do. Everything I do has a consequence. But I have also try to not let people’s reaction to me affect me. For example, yesterday my family and I went shopping at Costco. It is a huge building with a horrible cement floor. I had to run to the bathroom twice and each time, it was on the opposite side from where we were. By the time we left there, I could hardly walk. I do not use a cane. I wanted to just cry from the pain. I saw people look at me limping and lumbering by and I see the distain in their eyes. They do not see the woman who is in chronic pain, they see a red faced fat being rumpling by them. I would be lying if I said it didn’t bother me. But I do not want the choice to go out taken from me too.

In the spirit of compassion, try to look at other people with understanding that you do not know the whole picture. As much as I hate whining about this, I know there is a need for advocacy for my fellow suffers who have these invisible diseases. Judge not unless you walk the same walk.

The Spoon Theory by Christine Miserandino http://www.butyoudontlooksick.com – See more at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/#sthash.sD7SEFgH.dpuf

 

 

I am a sinner!!!

pink clouds 8-15

“I am a sinner. I have done something so egregious in my life that I deserve completely the issue at hand.”

This is how someone who has PTSD brought on by childhood trauma thinks. This is how a woman copes with the reality of living within an abusive relationship of a spouse or family member. This is what the perpetrator tells them and when it is someone you are supposed to trust, you take it as gospel.

The lesson is learned early when in innocence, the child or woman stands up to the inflictions and is beaten worse or punished even more cruelly. There is guilt placed on them that they are so flawed that their judgement is totally wrong. When you add isolation, which often happens, the person is so humiliated because they are led to believe they have caused their own situation and it is their entire fault. So they submit which is why so many people end up either dead or remain in the relationship.

Children often have no escape. They hear nothing but ridicule and criticism. They are abused mentally, physically and sexually by members of their closet trust unit, their family. This circle of constant wearing down of any self-worth is worn like a cloak and the energy given off to others in the world is a reflection of this lack of confidence. People treat people as the person treats themselves. And this only perpetuates their loss of confidence. When all hopes of a bright future are dashed at the malicious behavior of others, the person mentally gives up.

What happens in the body is another story. The body is designed to protect us. I have written a lot about the reaction of trauma and there is a ton of information on the physical deterioration of the human life form from trauma whether it is a one-time happening or many. There is evidence based research on the impact of trauma and the propensity of chronic illness later on in life. Please read the Ace Study information here: http://www.acestudy.org/

Now repeat this treatment for fifty years and then ask, who could possibly have a different outcome of low esteem and self-deprivation? How could the body after all those years of cortisol floods and other hormones and muscles in a permanent clinch all the time not affect the health of someone? This is my story. It is not about sympathy and it is very difficult, more difficult to talk and write about than anything I have ever done because you see….I am a sinner. I still in my subconscious think I deserved everything that ever happened to me. And so the manifestation of chronic illnesses is only another reinforcer.

The reason I am writing about this stems from another blog of the dear Dr. Victo Doloro: https://doctorly.wordpress.com/2015/08/27/eroding/ . It is about how obese patients are treated by the medical community. I wrote a long reply to that but it made me come to grips with something currently in my own life.

A week or so ago, I started to feel like absolute crap. We were headed out for vacation; I was able to quell the uneasiness of my ickiness with the anxiety of the trip. I always am anxious to some extreme, but going away is very difficult. I lose what little safety I think I have. Once away, I still was anxious and I thought it was about work. It is what I do. I find a reason for something so I can deal with the guilt of not being perfect. Although we had a splendid time, I knew something was wrong Big Time. We got back and the symptoms did not get better. If anything, I felt worse. I had my nurse educator take my blood pressure and sure enough it was up there, more so than it has been for a long while. I decided to look at my glucose, and yup, it was up. I took readings for four days and it was constantly up there.

I did a very difficult thing. I called my doctor and made an appointment and I asked him to order all sorts of blood work. On Friday, the lab tests came back and there was nothing significant in the findings. I was within a range I had been in before. This summer had been a whirlwind of barbeques and going out every weekend and enjoying ice cream cones while sitting by the canal. And I just came back from vacation where we treated ourselves to what-ever we wanted including shell fish. I had brought all my numbers down when I was on Weight Watchers and because of the change in eating habits, I actually as mindful on the trip and not a crazy fool. I only gained four pounds back from which meant I was still 20 pounds lighter than where I was less than a year ago. Just knowing that made me feel better.

This morning, the last test came back (urine) and it was off the chart. From what I can tell, my kidney crashed again. I had taken a shot (Simponi for my Psoriatic Arthritis) the Wednesday before we left. I had a reaction at the injection site I have never had before (I have had seven shots of this product) I noticed the next day that I felt like my blood pressure was up and I was very stressed. As I said, the anxiety of the trip and so forth. On the trip, I was not drinking water as much as I normally do because of how much I have to pee every five minutes and you can’t do that when you are traveling. I also consumed restaurant food which has a ton more salt than I use. But according to what I have read, I should have edema, and I don’t. There is also the possibility that the test was contaminated and the outrageous reading is inaccurate.

But here is the point of this long epistle. It took me four days to call the doctor. Why? Because in my mind I am totally blaming myself for whatever is happening. I am in a state of being triggered from guilt and the fear of oncoming punishment. For me, having to go to the hospital for more tests makes everything in my body tighten to the point of almost being crippled. I am sure it is adding to the heighten BP. Worse is the treatment I know I will receive. My GP is not like that. But this will surely mean a trip to a nephrologist and/or endocrinologist. My last experience was beyond awful and I wrote about it in Victo’ s post and I have written before about it. Even the nephrologist I saw never talked to me about kidney disease, but only about he bet me I would be so much healthier if I lost 25 pounds. HELLO??? I did and this happened anyways.

I feel in the depth of my soul like I have been captured like a caged animal and I am trapped. Now I will be paraded like a circus animal where people can poke fun and ridicule me. They will tell me that this is all my fault because I am fat and from the front desk to the person who will have to weight me, they will treat me terrible. It is an awful feeling. But I know I have to do something. My fear at one point was so strong that I almost said “screw it. I have to die of something.” Then my new found bravery came into play and I am facing this head on. First asshole who says something that this is my fault because I am fat is going to get an earful from me. I wish I could come up with a card to hand out starting with, “ you are an uniformed asshole! IF you only knew…..” The other thing that this and the conversations on Victo’s blog did was reinforced my desire to continue to work in trauma informed studies. I completed a certification last year in working with organizations to be more trauma informed. There is another longer certification in becoming a trauma informed specialist and I am going to go for that this year.

I know that the fear of seeking medical help is extremely common. The level of anxiety brought on from illness for people with PTSD from any form of trauma is unmeasurable. It is a major cause of suicide. It is only in recent years that PTSD is acceptable for people in the military. It was not uncommon and is still prevalent for soldiers returning to suffer major uncorrectable illnesses because of PTSD. They try to treat the illness and not the whole situation. There is still a stigma of being a weakling. People with childhood trauma and domestic violence victims are very much not understood or even accepted. Countless doctors do not do a trauma screen to see the route of diseases started back when they were physically abused when they were five. And until we stop  degrading and humiliating the victims, they are not going to speak up.

I am going to add to this, although I know this is going to be another post at another time. There is a lot of work out there dealing with people with PTSD and downregulating the body reaction to it. There is ton of stuff on mindfulness and meditation and sensory and energy work and other therapies. I have spent a ton of money and years on trying to find a solution. Although it has helped, some more than others, I am convinced that this is not the cure. I believe there is some so deeply engrained in the body that no one has actually discovered and is able to truly turn off. They can dim it, but not eradicate it. And, like anything, it is hard to say that this too is a failure. But this is all for another time.

 

 

 

 

 

 

 

 

 

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.

 

 

 

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.

 

 

 

Musings on a dark Sunday Morning

snow 2014

This last week was a very interesting week. It had a mixture of joy and also a reality check. I am two months away from my favorite time of the year. The anticipation is almost as good as a young child waiting for their birthday. But today, I am up early sitting at my table with my cat purring to my left and a hot cup of coffee to my right. The doggies are snuggled up in their couch beds and hubby is asleep. There is an ominous bank of dark clouds to the west and the light is filled with that gloom the proceeds a snow storm. The forecast is calling for over a foot today and into tonight with more tomorrow. I do not have to go anywhere until tomorrow morning and I am not going to start to worry until tonight.  For now, my bliss is radiating and warming my heart.

I am trying to enjoy the simple good things in my life. I had a kick in the head this week which prompted me to revisit things. My mother-in-law (MIL) has Alzheimer’s. She has gotten very bad since Christmas or maybe she was then but there was so much going on I did not noticing. This week, my Father-in-law (FIL) went to emergency for chest pains. Turned out to be GERD and was fine, but they kept him overnight. Someone had to stay with MIL. My hubby and I were elected. I want to spend about an hour on the selfishness of my sister-in-law, but that will change my mood and so I am not going there.

My MIL is a sweet little French woman. When I met her six years ago, she was sharp, funny and impeccable about her looks. She went to the hairdresser every week, had her nails done, and dressed with simplicity and elegance. She and FIL lived in Florida and we could not afford to come down and visit. They moved up here after she had surgery for breast cancer. It changed her.

Now she cannot remember her own children. Funny, she knows who I am completely. I make her laugh. She does not do much of that. I also listen to her. Her family does not deal with her well. She does not take care of herself at all anymore. She smells and her hair is a mess. She does not remember she is hungry or when she has eaten or had something to drink. She constantly repeats the same five questions over and over. It is hell for my FIL who is 94.His guilt runs so deep that he will not put her in a memory care unit where she really needs to go. My brother-in-law had it all set up but again, my SIL stopped it. She won’t do anything to help and does not want her inheritance to be spent on more expensive care. Again, I am not going there right now. So they two of them watch TV at full blast because they cannot hear, eat the over-salted crappy food served in the dining room or delivered and sleeping. They do not go out as it is too much for my MIL.

My wake-up call is that this is my future: Living in a tiny apartment with no future but death. It could make anyone crazy. So with whatever I have left, I want to make it good. I do not think I will live as long as they are either. They were very healthy until the last five years. They had a good life. My FIL retired at 55 from the post office with a healthy pension from there. They traveled and participated in life with all the gusto they had. This disease has robbed them of those pleasures.

My MIL does not do well with a lot of people in the room, and yet, every holiday we pack fifteen or more people in the tiny apartment. My husband is the worst for spending time with them. He never goes over. There is a lot of painful history for him which he will not share. But when the chips are down, his parents call him. He spent 24 hours with his Mom this week and it was very difficult, but he came home also a lot more appreciative of what he has.

Another event this week was the situation with my shot. After haggling with the pharmacy every night for two weeks for hours, they said they were going to ship on Saturday. Saturday came and went and no shipment. I called my doctor’s office on Monday, who called them and they said they did ship. And they did…but the delivery was left upstairs by the door we do not use tucked away where we did not see it. So it sat outside in subfreezing temperatures for two days. It was ruined. I thought they had lied to me as they had been doing for two weeks, so I did not look for it when it was not where they always put it. I have been receiving shipments at the lower front door for 15 years. They will not ship another. This shot costs over $1800.00 so I am SOL. My pain level has steadily increased to the point I cannot sleep for more than four-hour blocks. My ankles and knees are giving out and my neck feels like it has two screws that are being turned daily. I am grateful that there is something out there that will help to lower this pain. If this was thirty years ago, I would not have much choice but to suffer. No wonder people drank rheumatism medicine. I have a stash of my old prescription shot in the refrigerator which is good for two years and I am going to take one of those for now. It does not work as well as the new shot, but it is something.

The bright spot of the week is I have a new office at work. My old office was in the upstairs center of the building. I had no natural light at all. I had three incandescent lamps on to create the feeling of natural light. My new office is huge and has a window. I do not have a door, but I did not before either. It is walled off with cabinets that face the hall for another department. It was a large space where the Meals on Wheels volunteers had but they have been moved to a new area. We are growing so big that the whole building is be rearranged. When I was approached about the move, I asked about the space and they were thrilled to put me there. They built it exactly to my specification which was wonderful.  I was the first office and now it will create a change of movement. They move someone in on Monday to “the hole”, my old office. My new place is twice the size and I have a window. The roof of the building is the ceiling so I can hear it rain and storm. We can hear the geese honking as they fly over. But I could not see anything. I would have to find a spot to go to if I wanted to see what was happening outside. This was the window I would go to. It was meant to be mine. I left the new place a mess on Friday with all the boxes still packed. I was too sore to unpack after moving in. It will be my project this week. It will really make a difference for me at work. Where I was before, everyone can hear you breathe as I was surrounded by other cubbies. I could not make a phone call, or listen to music or forest sounds, which I like. No plants would grow in the lack of light. Even the overhead fluorescent lights were turned off because the girl behind me got headaches. It was so dark with dull grey cloth panels for walls. My new office is pale green and one wall is very pale blue and looks white. I have more cabinets and space. I have places for my photography. Did I say it has a window?

I had my first meeting with our CEO also this week. She is a sharp lady. She was very pleased as I came prepared with my 2015 year work plan. I was right in line with her thoughts so we hit it off great. She is a no-nonsense nurse who wants to be involved directly with her agency. I like her. Things are going to get shaken up pretty quickly and the Crone Mafia better be prepared. One QA nurse who had 43 years there was offer the opportunity to retire and leaves this week. The CEO, named Jane, also shared her amazing weight loss of over 150 pounds. She was very encouraging. She knows how hard it is. She said I can come for encouragement anytime.

And on that point, I have lost almost 12 pounds for my first month. WW is coming in and doing a meeting starting on Tuesday and I am signing up. I will keep my online account as well. We had a party on Thursday with two chocolate cakes. I took two pieces, ate about a third of each and wrapped them up to chew on. The next day I took two mouthfuls, and threw them out. This is significant for me because chocolate cake is my favorite food. I have discovered that a taste is often enough. Even the hubby is getting into it now at home. He is not as dedicated, but he is dropping a few pounds here and there.

My cat is  bathing herself and singing away. Magoo did not come out of her room for almost a year and when we had construction done last year, she went back to hiding. For her to spend every morning with me is a treat. It is already snowing now, so I am sure the forecast will change with more snow. I would seriously think about calling in tomorrow, but I have a new office to set up. Did I tell you it has a window?

Suffering and compassion

reaaching

I have been reading some posts that stuck with me for the past few days so it is time to write my thoughts. The Good Doc wrote one that took my breath. It was about suffering. It was about hopelessness. See the post here. https://doctorly.wordpress.com/2015/01/23/fly-fly-away/

No one knows truly what another is suffering with. The word suffer conjures up images of intense poverty and starvation for most. But everyone suffers with something. I am at loss for why. Many religious fanatics would say it is the will of God. But does that make sense when in the same breath they preach goodness and benevolence coming from this same entity. Why would a higher power want its “subjects” to suffer? I never have nor will I ever understand this.

Do we all have some form of suffering that challenges us? And who are we to judge the level and which is more wretched? Why is it we accept the level of suffering in some and not others?  I could list the things in this world that outrage me and yet, that is about the extent of what I do about it, much like most folks.

And that is because I have to deal with my suffering and getting through life. And truly, that is about what it sums up to be. Getting through it all and making it to the next day. Believe me, my suffering is nothing in comparison to others, but that’s not the point. We all have a level of strife and frustration that is our suffering to deal with.

What makes suffering so miserable is that even though we all have it, none of us feel or deal with it the same. And you cannot truly understand or appreciate what another person is dealing with because being human comes with multiple variables. What you may be able to deal with, I cannot and vice versa.

When I read the post about the girl dying from Lupus, I felt a connection of suffering with her. I too know what it feels like to live with pain.  I too know the frustration of losing the control of the body to something that will kill me eventually. However, my death is not imminent like hers.

I am not wheelchair ridden and I do respond to medication. However, the pharmacy still has not shipped it. Friday I was on the phone for two hours. I was put on hold and just left the phone on speaker. I must have out waited her because when she came back on she said they were shipping my drug and went through the whole procedure to set up the delivery. It was all a lie. She was just getting rid of me. This is my form of suffering because I spent a weekend of not being able to sleep more than a couple hours at a time because of the pain. Is it the same as the girl in the chair? Hell no, but it is my level of suffering.

So what is the point of this post? Although I do not understand suffering and I certainly do not tolerate people who lie to me, I have to live with both. And although it really rankles me, I have to move on.

When I read the post replies to the Doc’s story, I saw different levels of compassion. The Doctor herself has an extraordinary amount of compassion and empathy which is truly amazing. Other posts were not so empathetic. I think unless you have felt the constant and profound pain similar to what this woman in the chair feels, it is hard to imagine wanting to be released from it even if it means death.

So the answer to suffering is compassion. But not only compassion to others, but also to ourselves. I know many of my friends who silently suffer because that is what we do, especially women. We wear our suffering like a badge. “OH, I have so much to do, I am so fat, I have to take care of this person or that child” and so on. They are all valid levels of suffering.

What would happen if business were built on integrity and compassion? What would this world be like if we taught kids from the get-go what compassion is and why it is necessary? What if bullying was not a trend but treated like a plague. What if the government was really concerned about its population it serves and not about self-serving? The list is endless. And none of it is in our total control.

But self-compassion is. So for today, take care of yourself. I think if we did this more, that the compassion would naturally extend out to others. And if you know someone who is suffering, take a moment to just be present for them. That’s all it takes sometimes. Just be there. Listen, care and be compassionate.

 

I am sitting here trying to write through the tears that are pouring out of my eyes. I hate this. I am so frustrated I could melt iron with my anger. And because I know my anger does nothing, I am even more frustrated and around I go until I just burst into tears and sit sobbing until I give up and go to bed. I just thought I would write and see if it helps. So….why am I so upset? Several things.

I have Psoriatic Arthritis. For those who do not know, it is an auto-immune disease which targets the joints and the surround tissue. On the scale of severity, I am pretty lucky and it has only disintegrated my foot, ankle and toes on either foot and I have some deterioration in my lower spine. I can live with the fact that I limp on some days. I can also live with the shooting pain for the most part and the pervasive ache that is so deep in my bones it seems to be like hot lava.

What I cannot live with is the incompetency of the people who I have to work with to get the drug that helps alleviate this pain. Because I am on a specialty drug, I have to go to a high end mail order pharmacy for my drug. Every single time I had to deal with the company, Accredo, it was a major clusterfuck. And they lie like a cheap rug. One time I had to go without my medication for almost three months before they straightened out their mistakes. And then when it was all done, and I went to order the following month, they cancelled my prescription because I had not called for it in three months.

Well, my insurance switched to a new pharmacy. Can you guess what happened? They have it all screwed up. Although it was supposed to be a clear transfer of the script and authorization, it did not happen. So now I am on week 2 past due for my med because of their screw up. First they did not have the authorization and now they say they have an authorization, but it is for the wrong dose. What I do not get is nothing changed from the one pharmacy and the script was for at least six months.

Meanwhile, the pain crawls up my back like a sloth climbing a tree. PsA does not affect just my joints. It also affects my hormones and internal organs. It changes my body chemistry. This creates a situation where I am even more frustrated. I put on weight. So I have been on Weight Watchers now going on three weeks. I lost many pounds the first week, less the next and so far this week I have GAINED 2.5 pounds.

Everyone will say, “it’s what I am eating.” IT IS NOT! I am tracking every mouthful of my food intake.

I am following the point system which gives you a gimme on fruits and vegetables. They say you can eat all you want. Well, for me, it is the basis for my diet normally so this is very easy. But it does not make me lose weight. So now, I am looking up the nutritional value of even the fruits and veggies. For example, broccoli is wonderful for you. But a head of broccoli has five points when you put it into the WW calculator. That’s a lot of points. And yes, I can eat a whole head of broccoli between lunch and dinner. Even with me counting those, I still eat every day 10 or less points than the amount I can. And I gained weight. Do you have any idea how frustrating this is?

So the answer is, move more. Get up and exercise. Well,……. See above. Last night I worked with my DVD on yoga. This morning, I was in pain. As the day wore on, the pain increased instead of got better so I am not doing it again tonight… Anyone else see the issue with this?

Writing helped me to stop crying. I am grateful for that. But I know as soon as I head to bed, I will start again.

On top of all of this, a dear friend was diagnosed with cancer today. This is a re-occurrence for her, but it is not in the same place as it was years ago. I know she will probably be fine, but I cried all the way home thinking about her and how brave and wonderful she is.

And then I think…I have an issue? Ok that set me off again… Night!

What if we had a Fattie Ghetto?

I read something earlier today in the paper which has stuck in my craw all day, festering and making me more and more angry. This was an editorial in the A section. I believe in the right to speak your mind. But when something gets published in the local paper, you better have your facts. This woman clearly did not and was out to make her stand no matter what. I got to tell you, if she was in front of me, I would have hit her. (Not really, I do not hit people) but she would have made the running for the first.

Seems she is proposing legislation to sanction overweight people. She wanted to propose a bill or mandate that people who were morbidity obese HAVE to do something about it. I am sure she is proposing surgery. Maybe she would like people to sew their mouths shut, which is pretty close to having your stomach stitched off. She said anyone who is obese would be sanctioned as well, but she did not reiterate how. She had no statistics, but spouted off like she was an authority on the cost of medical expenses incurred by fatties. (my word…because I am really getting cranked up now) She then went on to liken this legislation to be imposed and regulated the same way that cigarette smokers were sanctioned.

Here is how I see her thinking this would work: Every time a fat person wanted to buy food, they would have to step on a scale. And according to whatever weight they were, they would pay a higher percentage for their purchase. Chicken taco for a skinny mini: $3.59. For a fattie, 35.49. with taxes. Seems fair right? I mean, why should we pay for the extra health cost because this person wants to eat? Right? I mean after all, they are so fat they don’t need to eat.

GRRRRRRR….this is akin to a Nazi state. All the fatties will have to reside in a fat ghetto where they only get water and low fat Weight Watcher’s bread.

When my husband and I first met, I weighed less. We were so poor. We were going to college, working two shit jobs each and trying to keep the mortgage. That was my primary bill. That and the ten year old cars we had. When I went grocery shopping, I spent what I could. We were also feeding his 14 year old daughter who could pack it away. What do you think I bought? I bought the cheapest thing that went the farthest; pasta and sauce with cheap meat. We ate it all the time. I have discovered now for me it is the worse trigger food I have. That and white breads, which was another staple. The result of course was we put on weight.

We went shopping this weekend as I wrote earlier. We filled ¾ of the shopping cart with fruits and vegetables. The rest was a 6 pound only white meat turkey breast for $18.00, low fat ground chicken, and low fat other products like broth and some low fat cheese. No crap at all in the cart. Our bill for two people was over $200.00. We can afford that now, but that was more than I spent in a month back in the day.

When I was teaching in an urban college, I remember the mothers telling me how much they hated shopping for food for the kids. It was cheaper to get a happy meal and be done with it than shop for good healthy products. And on top of that, they were going to school and working jobs. When were they supposed to fix these fancy healthy meals?

To that point, I spent the whole weekend cooking. I made Weigh Watcher’s 1 point vegetable soup. I made buckets of the stuff. I made the turkey breast. We had haddock on Friday. $13.99 a pound. One piece of fish spilt between the two of us was almost $15.00. We bought what fruit was available. All of it was ridiculously priced because it has to be shipped in. I just cut it up to have it finger ready. I made low fat burgers for dinner on Sat and the rest will be for the week. The ground chicken was $4.49 for the package. The package is only 12 ounces, so it cost more than $5.00 a pound. Tricky aren’t they? My weekend off was spent on this effort to eat healthy. In between was spent doing wash and cleaning. Such fun!

My point is this. Here I am working so hard at this healthy life style. This B* tch has the balls to throw out there that all fat people should be penalized for being fat because the impact on the cost of medical issues. I am not going to deny that there is a high prevalence of more disease with obesity. However, not all fat people sit on their ass all day watching TV and stuffing their faces with beer and tacos. Some do. I know this. But not all.

When we were driving around this weekend, I was paying special attention to what food joints we passed. I was shocked and thought no wonder this is an epidemic. Every corner had a fast food joint from burgers to fried chicken. There were tons of pizza palaces and taco stands. There were ice cream and yogurt shops, donuts and on one street, two bake shops and a chocolate store. I did not see one salad joint although I know they exist.

And as far as medical costs: here is something to think about. I worked in the system so I know of what I speak. All people diagnosed with mental retardation or developed disabled have the opportunity to have the State and Federal government pay for everything for them from their diagnosis at infancy to death. They can get housing, food, medical treatment and in some cases full ride to school. Most do not get a degree, but the State believes they have the right to a higher education. And they cost the school systems huge dollars because they need so many services and support. And part of their genetic makeup makes them very susceptible to illness. It was rare to have someone who was MRDD live past 30. We used to institutionalize them to keep society safe. We warehoused them in droves. Then Geraldo Rivera went to Willowbrook in 1987 (not that long ago) and the rest is history. My point is that this is a population that cost taxpayers millions and millions. Lots of dollars have been spent to understand their genetic makeup in order to help them have a better life. 28 years ago people who were MRDD were cast out and ridiculed for a genetic hiccup. Maybe we should have taxed the parents for having mentally challenged children and putting a burden on society. What do you think? (By the way, if you agree with this, stop reading, I cannot help you and you should be ashamed)

See, I am sure people do not see the connection. For some reason we cannot move past that not all overweight people have a terrible lifestyle. People cannot and for some reason will not accept that because their bodies fight them constantly either with metabolism and/or some form of mobility issue some people are prone to putting on weight. I believe there is a genetic connection. If it was all up to what goes in the mouth or how much movement people do, than why are not all people fat? Some people can eat a house of food and not gain weight. Add to this fact that everything slows down as we age including our ability to process sugar. That’s why everyone is getting diabetes for their 50th birthday. Want to guess the cost of diabetic medical costs? Maybe we should put them in the fat ghetto too as they probably overweight anyways or so they say. I hope my skinny super hyper active friend who was diagnosed at 55 with diabetes reads this. She will love it!

And we have such limited choices if you want to purchase prepared foods that are healthy. Much easier to pop a big Mac and call it good. If you scrape the secret sauce off, it will save you 400 calories….. I am joking. I have not eaten McDonald in 30 years.

I cannot and will not stop fighting for this awareness until I fall on my face and suffocate myself in my largeness. That last part, by the way….was sarcasm.

This is not so easy

I have been absent from writing this week. It has been busy, but that is not the reason. I am just going through one of those things and one of those times. January is not a favorite month for me at all. I am the type of person who loves having a million projects going all at once. That is one of the things I like about December. It is so busy. But there is an anticlimactic feeling when it is all over. I don’t want to do anything.

But I am also in the process now of changing my lifestyle and it is becoming apparent to me how necessary this is. I am not sure of the outcome. But in typical fashion I have overdone things.

I went on Weight Watchers. This is my third try with this program. I love it only because it really is a good product to use as a tool. That is all it is. A tool. The thing that will make it work or not is between my ears more than any place. I have to re-evaluate what I do all day.

Fortunately for me I love vegetables. I am very satisfied with a plate full of broccoli. It has not been hard to swing into eating good things. I get into trouble when I am bored. My body sends a message that I can relieve my boredom by munching. This is very common. Good news…veggies are crunchy. Bad news is what happened last week. I had a major diverticulitis attack. Inflammation runs rampant in my body because of the Psoriatic Arthritis. Because of that, about four years ago, I ended up in the hospital and was diagnosed with diverticulitis. I have had a few mild attacks since. Once you have it, you get it again and again. The one last week was terrible. There is nothing much to do about it except switch to soft foods and broth for a while. That is what I did and I was better. But it was brought on because I put too much fiber in.

The other reason it happened is that I sit at my desk all week. Sitting is terrible for this condition and just not helpful for losing weight. I am trying now to walk around inside our square building a couple of times. I am not the only one so no one says anything when they see you go by several times in a row. But it is something I have to be mindful to do because the day does get away from me. Friday was a perfect example. Every time I went to go walk, someone came in to chat. My Fridays were (operative word: were) my day to catch up because I had no meetings. I had three this Friday. Many people came to grouse because the payroll was messed up and no one in our division got paid. (This is another story) So the tension was high all day and people wanted to kibitz. This happens often that my intention of walking gets waylaid. By the time I get home I am exhausted and have no desire to go out in the subzero cold.

I have to change my thinking on this though. I have to make time for me and I know this. But I also have to realize Rome was not built in a day. For example, Saturday is our shopping day. Once a month, we do a huge shopping. Because I wanted healthier choices in the house we decided to go to the Mecca of stores, Wegmans. Now, there are grocery stores and then there is Wegmans. Their produce is divine. You pay a bit more but it is worth it. It was a nice day so I said lets go to the Mother ship, their premier store in Pittsford. This Wegmans takes up the whole end of a shopping mall. When Cher was here, this is where she wanted to go. It is huge. I wanted the walk. It is like going to a bazaar in India. Bright and colorful and there are people handing out samples everywhere. I do not like the crowds but the store was reasonable. So we walked the store and every isle. Two hours later, and almost to the end and checkout, my legs began to hurt horribly. This is not just muscle pain. I do not mind hurting muscles because it means you are doing something. This is a deep in the bone ache brought on by the PsA. We pushed on and by the time I got home I was ok. It was just too much.

This is what I do. I do too much. I grab on to something and go hog wild and overdo it. I have to slow this down and make it part of my lifestyle. But if you know me, I am not patient. This whole thing has been a bit frustrating.

One of the things people do not get with this type of arthritis is that it is a reaction to stimulation. It is a bad reaction. When I exercise, especially if it is a movement that I have not done or I repeated it a lot my body says. “Oh look, she has a boo boo” and swarms the area with inflammation. Because of that, I have really stopped moving. To add to this, I have extreme charlie horses. I know why I get them, and it is not for any of the physical reasons like dehydration. It is a chemical imbalance and they are triggered because I am in a total body clench most of the time. When I sleep and relax, they go off. I am working on that and have been pretty successful in lessening that response. But, I get them also if I move a certain way and that way can be anytime. I discovered the medicine I am on causes these types of charlies. These muscle cramps are not just in my calves. They are in my thighs and the worse ones are in my gut and abdomen. I get them in my shoulders and back also. Just moving slightly the wrong way and I am writhing in pain.

This is adds to the frustration because I want to move. I sat down the other night to work with my yoga DVD and set off a charlie that hurt into the next day.

In my head, I am trying to not let this all get to me. It would be easier to just say f**k it and let nature takes it course with me. But that would really be stupid and I am not stupid. Nothing I have ever done in my life has been easy. But that’s the point. There have been many roadblocks and obstacles in my life and I have overcome them. I do not remember the things that had me tweaked five years ago. I do not remember things had me tweaked five months ago. Point is we do get over things if we work at it. I cherish what I do have in my life because I worked so hard for it. I have to make my mind up what do I want and then go for it. And then “I need to cut me some slack, Jack!”

The eyes have it

eyes    Today I feel like I reached the bottom, which is fine and now I am on the way up again. So true confessions, there was more going on with my life which I did not share because I did not know all the facts. Something occurred today, which has swung the pendulum. One thing I have learned in the past three years “hang on, nothing stays the same.”

The short story is on New Year’s Eve, I went for an eye appointment to get new glasses. It has been four years and my glasses broke right in half. I had an old pair which was great. Seems my prescription for the past ten years has not changed much. Wonderful!

However this time, the doctor found an anomaly in my eye. She said my optic nerve was enlarged. I made an instant appointment to see a specialist. And then, being who I am, I started Googling.

Turns out that the condition has a variety of names, none of which I knew. Seems the cause of this condition can be from medication, blood pressure, fluid, spinal fluid, and the one that stuck with me…..being obese, which is called papilledema. When I read that, I was devastated and furious. I cannot find anywhere what the connection is and why this can cause this condition.

The first technician I saw today looked at the readings and info from the first doctor and said she felt the readings indicated a normal range. But the Doctor said to do tests anyways. So I went through a battery of tests for about an hour. I had different drops and stared at all sorts of bright things.

This was all fine. Leading up to the appointment was not. All the information I read was….well, it just added to the failure I have been feeling about myself lately. I felt “I did this. I deserved it. If I was thinner, this would not be an issue.” No one can beat themselves up like I can. It was a week of this and it got worse and worse. I would check something on google during work and get upset and then come home and read it again, only adding to my angst.

The bottom line is this. I do not have papilledema. I have the markers for MAYBE glaucoma…. Or it is just the way my eye cup is. She said do not lose any sleep. I asked her if this had anything to do with being fat. She just laughed (nicely) and said no. It may be nothing at all, but without any past history she can’t tell. I may have been born with this enlarged opening. She said to just make sure I have an eye exam every year. We are going to do more baseline readings also. She said actually my eyes were healthy, pressure and depth and thickness of the cornea all were fine. I finally let out my breath.

I had been seeing the same eye doctor my husband had for years. I saw him for about 8 years. Last year, my hubby had to have surgery for cataracts that were so bad, one eye was almost totally occluded. And of course, my husband did not say anything. When they went in, it was much worse than they thought and he was under the knife for an hour…. for a fifteen minute surgery. He is now also seeing someone else.

If I had a vision loss of any kind, I would have known it. I am fanatical about my eyes. I am a photographer. I express myself though the lens. (I don’t post many here) I do so much with my eyes that they are absolutely precious to me. The punishment I put myself through this past week just is a demonstration of what people like me do to themselves.

The upshot of all this is I have this safety net in place to help me protect my eyes. I am ok with her prognosis and diagnosis as she was pretty convincing that this really was not an issue, but preventative.

And I think I finally faced up to some challenges I have about my health. So with this hurtle out of the way, I think things I will start to pick myself up again. I am up for the challenge.