A journal of healing

“Just go on a diet and lose some weight.” I do not know how many times I have heard this in my life. It has been said from well-meaning and not so well-meaning friends, medical people and people I do not even know. What right does anyone have to even propose such a life sentence? I supposed doctors think that if they say this, they will be absolved from better educated suggestions. But only someone who has lived a life of diets knows how really hard and almost impossible it is to be successful losing any real weight and keeping it off.

I am a large person from birth. I was my mother’s largest baby and also the largest female in my whole family by the time I was 11. I am not just talking about weight because in hindsight, I was not that overweight as I was told. But I was six or more inches taller and took a bigger size in my clothes than anyone else. I did not get the petite gene like my aunts, grandmothers or sister did. Matter of fact, my mother was 4 feet 9 inches and never weighed over 100 pounds accept when she was pregnant. How could she possibly relate to the mammoth she-child she had. Even my brothers were not large in size accept my one brother who was husky. But he played football and so that was ok.

I grew up in a world of carbs and candy. Sweets were ever where and the dinner table was heavy with fatty meat and starchy vegetables. It was not big deal for anyone else in my family. My parents also insisted on clean plates.

But somewhere around 14, my mother put me on my first real diet. Green beans and Jell-O. While others were indulging in spaghetti and desserts, I had green beans for my meal, and Jell-O for dessert. Not a recipe for success. This only left a bitter taste in my mouth about dieting.

As an adult, I made several attempts at diets. I did Weight Watchers a couple of times only to gain weight one time. One time I did lose weight only to gain it and some more back once I stopped.

Sustaining dieting is very difficult. Anyone who has tried to change any type of habit will tell you how hard it is. I find there is less empathy for someone who is dieting than someone who is quitting smoking. Why is that? It is just as difficult.

Our culture is mean. We demand that our females be slender and sleek. Yet we are bombarded with food ads. What a rotten tease. Does anyone else not see how unfair this is? I have yet to see a good ad for salads. But open any magazine and they are filled with baked yummies and cheese covered dishes. I stopped watching TV because of the ads a long time ago. But now, I won’t read a magazine either. And I have a subscription to a cheese magazine.  “Oh,  the irony.”

There are many fine folks out there who are raging a war on fat shamming. I believe in their work. I also belong to an organization that supports Health at Every Size. I don’t believe in diets to lose weight.

But I have to diet now. Have to. And it is not to lose weight. It is to save my kidneys. This is a fight for my life, not for being accepted for the way I look. I do not give a rat’s ass what people think about that and have not for a very long time.

Less than three months ago I went on a renal diet. It is not about calories. It is about protein, potassium and phosphorous consumption. My primary concern is protein. I gave up red meat in 1986. But I did consume large quantities of chicken, turkey and some fish. I gave up turkey completely as it also has high purines which are not good for kidneys. I will eat a little haddock once in a while. But giving up chicken has been very difficult.

Next time you are at a restaurant, try finding a low protein meal. EVERYTHING has some form of meat or fowl in it. Even salads are covered in either chicken or cold cuts. Not good. Mushrooms also are not good on a renal diet and I don’t like them much either. The next thing is look at the side dishes. Potatoes forever. Potatoes are a definite no-no. NO chips, no fries, no bakers with sour crème. Pasta has tomato sauce which is not allowed. Tomatoes are also everywhere.  Other choices like cottage cheese are not good due to the salt and potassium. Most other offerings are smothered with mayo, which is ok in small amounts.  Pasta is good on a renal diet but not good for weight and glucose. These are things I have to be concerned with too.

I do manage most times going out. But my husband and I have cut way down on going out to eat. It has really changed our habits. He has been supportive but is not as restrictive in what he eats.

Every once in a while I get very cranky. Then I know, it is time to have a free day. I know this is the only way I am going to be able to sustain this new eating lifestyle. It is not just a diet; it is a whole change in attitude and life. I don’t like being forced into things, but I have to let that go because I will never win on this. My not being careful will only harm me. And once my kidneys slip further in function, there is no going back.

Free days are not days I eat everything I can get my hands on. They are days when I know we are going out to eat. I track everything I put in mouth. Most days, I limit my calories to less than 1200 calories. That is fairly easy to do when I am home. I have eliminated most of the crap in the house. I keep the fridge full of fruit and salad makings. I have high quality things like homemade breads which I buy and freeze. I slice the bread and wrap each slice individually so I can only take out one at a time. Any snacks I have are very low calorie like rice rollers or popcorn.

But some days, it is not going to happen. I crave something more substantial for dinner than a salad.  We have gone out for ice crème four times this summer. I had birthday cake for my birthday. I have not had potatoes but I will have chicken once in a while. We enjoy pasta once in a while and are now going to try homemade gourmet pastas. Better ingredients and fewer additives. The first couple of times I slipped off the diet wagon, the guilt was terrible. But then it really is no one else’s problem so I have learned to cut myself some slack.

I discovered that even with my free days, I still have lost weight. After I have a free day, I come back the next day with more determination to follow my diet. And it easier to do because I am satisfied and not as bereft of whatever it was I wanted to eat. My labs have been fantastic and have steadied my kidney function. My doctors are very pleased.

And I hopefully can keep this lifestyle up for ever.

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  She lay there silently, so small in the bed. She was peaceful. Her chest rose and fell with each taxing breath and occasionally I could see a shudder from her heart. My friend was dying. How did this happen so abruptly, I thought to myself. But it wasn’t fast at all. It was years of this battle and much pain. It seems so inconceivable that her fight was coming to an end. The best thing was she would finally be able to be with the love of her life again.

I met her when she came back to work seven years ago. I was hired while she was out on sick leave. She had fallen and shattered her leg right below her hip when she was trying to open the garage door and the rope broke. At first, she seemed very distant to me. She was the recruiter for the company and was a bit put out that she did not hire me. She was always protective of her new hires. We worked in the Human Resource Department but I was in charge of training. But we attended the same meetings.

It took a while for us to get to know each other. We were almost the same age. She was 8 months older. I used to call her the ‘old lady’ as a joke. Our sense of humor was the same; flippant and rude and on the lewd side. Once we became friends, she would whisper something funny in meetings that only I could hear and get me in trouble because I could not hold back my giggles.

I do not remember how or when, but somehow, she began to trust me. She shared what was going on in her life. She had ovarian cancer. She went on heavy doses of chemo and that may have been one of the reasons her leg broke. She was wearing a wig but it was such a good one and I never knew. She was on strong pain medication as the leg did not heal well. She would go out soon for surgery to have the pins realigned as they had moved and were causing her great pain. Of course recovery for that would be difficult with the cancer and chemo.

But through all that, she always had time to sit and ask, “How are you doing?” And she was really concerned. It was not just a polite inquiry.  We talked about the strong medications we were on and how it messed with our weight. She would rarely complain, just more vocalizing her situation. She was never sorry for herself and distained pity. We would share our opinions of those we worked with finding that we had the same concerns and likes.  They did not treat her very well at the agency. But they did not treat many people well there.

She worked as much as she could. Then about two years ago, she started to really have some problems. The chemo she was on was just about killing her. She would make it to work and put in a full day. But she would come to my office just to breathe and relax and let the pain wash over her. She knew she could tell me what was going on without judgment. She was not eating or sleeping. She was exhausted and her counts were not great. She was going to go on something else. But this was the last fight. If this did not work, she was going to die.

She started on the new chemo and things seemed to be looking better. But the chemo was hard on her. So last fall, she finally decided that she needed to put all her energy into this process and stepped away from work. She was not retiring or quitting, she was just taking a leave. It was the best thing for her. I would miss her at work. I threw her a little luncheon with just a small group of us who knew what was going on. We gave her gag gifts and had a lovely time.

Four months later, I had to retire. My battle with my ongoing health issues forced me to make the same decision she had. Life was too precious to let the miserable atmosphere at work prevail in our lives. They threw me a party, but did not ask her to come, which made me angry. I retired, not planning to ever return.

But the month before I left, I found out that they were going to fire my friend. She was on leave, but it was at that point an unprotected leave as she had used up all her FLMA. Supposedly, her doctor has sent a letter saying she would not be coming back. The truth was the doctor’s letter said she would be out for another six months. But they let her go anyways. It hurt her to the core. Her job was everything to her. When she would go to chemotherapy, she would try to recruit nurses. She was always supporting things on their Facebook page. She believed in the place and had hired a majority of the clinicians there.

We had lunch once in a while when she felt up to going out. I went to visit her at her house and on one occasion when the weather got nice we went to a park for an afternoon. We would chat on the phone for hours sharing recipes and memories. She told me of the death of her husband. They were married for 12 years and had three boys. One day, he was killed on his motorcycle by someone who was not paying attention. She never stopped loving him. She would always share that she considered herself still married to him, 43 years later. One visit she told me about how she tended his grave and that she was going to be next to him.

In the beginning of June, my husband and step daughter were headed for our annual vacation to the Thousand Islands. She has called the night before and I had missed the call. Since I knew our chats were usually lengthy, I did not call her back. Then, I did the unforgivable. I forgot. Three weeks went by and I kept saying I had to call her. I wanted to wait for the “right time.” And then the day would get away from me.  I will never forgive myself for missing that call.

I got a text from a mutual friend to say she was in Hospice. I was devastated. I called her son who told me it was fine to come see her. He and I chatted for a brief bit. Her last words were to him. As he was leaving the night before, he called out, “Love you, Mom.” And she replied, “Love you too.” It was the only thing she said all day. She was unresponsive after that.

I did go see her. I said good-bye and wished her well on her next journey.  I knew her husband would be delighted to have her back again. I knew she was headed for a better place that was pain free. But I was going to miss her.

It will haunt me for the rest of my life about not calling her back. Did she call to say good-bye? She had fallen very ill and knew her fight was over. Our previous  phone call, she has said she was doing better.  I knew that the previous couple of months she had been fighting an infection from a tooth. She did not tell me how bad it really was. I should have guessed something was up because she would not physically get together. That was so like her to not have people worry about her.

But my friend is gone. What a lesson she left me with. Now is the most important moment of your life.

 

 

Views from the Garden

Switching up a bit and offering some of my photography. One of the great things about retiring is being able to spend time in my garden.

Soon as the weather got better, I got out there. This first shots are  actually sometime in May.                                                             This is June.           The trees in our neighborhood were gorgeous this year. Also my lilac bloomed more than it ever has.            We have resident bunnies, chipmunks, squirrels, doves and cardinals and a host of all kinds of other birdies.

  But I am glad we have a fence because this year the neighborhood hosted a deer heard.

I put in over four flats of flowers and now I have even more to plant.

 

The dogs love the garden as much as I do.  

   Pots before

Pots after     New this year was doing something with the front rock garden. Because there are so many roots in there I had to do something different.     Before

After      We love sitting out in the garden.  

 

 

“There is only one possibility for survival for you and that will be dialysis.”  When I heard that from the nephrologist, I could not believe my ears. Matter of fact, I sort of denied it for a while. Now it has been brewing in my head for many weeks. The whole visit was so overwhelming that I thought at first I misunderstood her, but I did not. But my advice is to take someone along with you when you go to the doctor. Someone you trust and who will remember what was said.

But I did hear her correctly because my next thing to do was take a class on kidney care and dialysis. Unfortunately, the nurse who taught it was terrible and self-centered. But she too said the same thing. And she also stated that there would be only one type of dialysis for me to choose.

And this sentence, this proclamation of my mortality is based solely on my size. No one looked at any medical chart. No one did an evaluation or in-depth study of my health history. One look at my physical shape and the decision was made.

I get this all the time with medical people. I was going to use medical professionals but there is nothing professional about the instant judgement based on the bias and discrimination inflicted on people of size.

Most of my adult life, before I became sick from a hereditary malady with my blood, I was healthy as an ox. I had normal blood pressure, normal everything including not being diabetic. I was very physical and active. I was just fat. I have been so my whole entire life from birth. I was a pudgy baby. Then it was cute. Doctors used to get so frustrated with the fact my glucose was below normal and it was like they were trying to make me diabetic. I did become diabetic but that was  because of the reaction to medication for the psoriatic arthritis. Matter of fact, ever thing cascaded downward after I had to go on very strong medications. I often wonder what would be if I never needed to take those drugs. How different my life would be?

But this is the cards I was dealt, so I have to deal with it. But I do not have to accept being told that I do not have options because I am fat. No one should. If they had said I could only have this one type of dialysis because of my blood condition, I would understand it. But to tell me that a transplant is out of the question without delving into a complete work up is wrong. To tell me that there is only one kind of dialysis that I will be able to use without knowing my history and for that fact, not being a doctor, was unethical of that nurse.

You cannot imagine how this feels. I know so many large people who face this every day. The declared sentences, the judgments, the uniformed decisions based on prejudice and bias are rampant. Our health care system is not accepting and it is not just for people of size. It is for anyone who does not fit the mold of the desired patient. I won’t even go into poverty and how the poor get treated. That is not this fight.

People think that people of size choose to be fat. The word FAT has such a horrible connotation to it, unlike any other word to describe a human. We don’t cringe when say someone is tall or short. We have learned not to designate a person by their skin in a derogatory manner anymore. (Well some still do) We are offended if someone calls someone by their disability. Why is it an insult to call someone fat? Because our country has been fed bullshit by the medical world and by the media that being fat is the worst thing in the world to be. It is preached by certain religions that gluttony is a sin. Someone who is large is not automatically a “glutton”. Even small children know fat is a “bad” thing.

This is not just about whether or not I can have a transplant. It is about treating people equally. This is just my personal example of a death sentence handed unjustified and without full discovery. It a court of law, it would be thrown out. This is just one small example of how discrimination kills. This is a form of annihilation. “We let the fat people die and they will go away.” Fat people live in a ghetto of isolation all over this country.

As I approach the celebration of another birthday this Friday, I cannot sit back and let this continue. I am becoming a warrior. I am powering up with education. I am gathering information and arming myself with facts. And I will fight this fight as much as I can. I know there are many of us now who will not sit back and let this discrimination continue.

 

 

As I lay in bed this morning, I could feel my heart pounding and hear it in my ears. I know that means I had too much potassium. It used to be so bad that it was hard to think with the loudness in my ears. Now I don’t hear it very often because I am watching what I eat. But yesterday was a holiday, and in my family we celebrate with food. I allowed myself a free day. I did not go crazy, but after all the changes I made in the last month, it really impacted how I feel today. Was it worth it? Well, maybe.

The other thing is that I am guilt ridden. I am so food conscious because of my size. I often get peoples’ stares at restaurants as they feel entitled to judge my food consumption. I normally make a face right back if I catch someone glaring at me. It also amazes me that they think they have the right to judge.

My indulgence yesterday was to go to our favorite ice cream stand and get a dish of the best soft serve ever. Their small is huge. I had forgotten how huge. As we approached the stand, this old crow was sitting with a bunch of other folks and glared at us. I just looked at her and made a snarl face. She looked away but then I saw her return to her glare. The other people she was eating with were enjoying their food but not her. I do not think she enjoys much. We got our ice cream and came back out to eat it and there was sour puss staring again. I just ignored her. People do not realize what harm they cause when they look at people with judgment and disgust. We polished off our dishes of delightful twist and we left.

For dinner, we were doing a cookout and I had planned to have a ground chicken burger, mac salad and cole slaw in my daily planning for the day. I decided because we had mowed the lawn and taken a small walk in the park we visited that I had burned enough calories to have one of the freshly baked rolls my husband bought. I have not eaten much bread at all and this was a treat. The burger also was huge. I did share some of it with the dogs, but I ate most of it. It was a good 6 or 7 ounces.

The daily totals were almost double what I normally eat. The protein was at my limit but I usually am way under. Protein and potassium are the two things I am most concerned about in my consumption. Sugar and fat is secondary.

My glucose reading this morning was just fine and not elevated at all. I was worried it was. But I drank a ton of water to help flush out the sugar. That made me realize that I had planned carefully and I was ok with the slight indulgence.

But as I lay there this morning I thought what if all that protein was too much? What if I damaged my kidneys and pushed it to the next level? There is no going backwards for the most part. Once they say its dialysis, that’s it. No one comes off dialysis unless they have a transplant, so I am told.

No one really understands how totally terrified I am of having dialysis. When I first was told, I felt like someone had stabbed me in the heart and kicked me in the gut. There are times now when I am alone that I will weep silently. I feel I am facing a torturous death sentence. Dramatic, I know, but it is how I feel. I am not all that brave and this is too much at times for me to handle. I can’t share this in conversation because unless you are in the same boat, people cannot grasp the fear.

I am my own worst enemy. I worry too much. But being cautious about what I eat is a serious decision. I know too many people who are cavalier about what they eat and then when they end up with a diagnosis, they continue with their bad habits and only get sicker. Then they ask why.

Today I get back on the wagon, so to speak. There is some feeling of success when I am in control. I just hope no damage was done. I will not know for a week until I have labs. I am sure I will perseverate about it the whole time.

 

     Every month for the rest of my life I will have to have labs done. This is in order to see if there are any changes in my values and if there is a decline in my kidney function. It is like spinning a roulette wheel. The anticipation before going for the labs is tough. But waiting for the results is worse. Two labs ago, I was headed for dialysis in a rapid way.

But I took control of what I could and that was what I eat. I was so gung ho at first but the daily necessity of it does make it weary. I am keeping a food journal using an app called https://www.myfitnesspal.com. I track everything that goes into my mouth. I plan every meal and bargain with myself. If I eat this, I don’t eat that. I find it very helpful to know exactly what the calories are and other components of food that I need to keep track of like potassium and protein.

It also tracks my exercise. And when I say exercise, I mean what I do. I don’t go to a gym. I track what I do around the house and garden. The data base is pretty extensive but you can also find other calculators to measure how much output you do daily. I have been cleaning out and packing up old clothes and items around the house. I have been working on the garden and reseeding the lawn. You would be surprised to find that you can burn over 300 calories an hour just doing work around the house.

For the last years, I have been extremely sedentary due to my job. The only movement I had for the course of the day was to go from one meeting to another. I sat all day. When I retired in January, I was extremely short of breath and tired just standing. Sometimes, going shopping required that I use a motorized cart to get through a large store.

Almost every day I plan an activity that will use mobility. Yesterday for example, we went to BJ’s. It is a huge store and I usually have to ride a cart. Yesterday, I walked it and very rapidly. I haven’t been able to do that for at least two years.

This is a long haul process. I have to admit, it’s horribly hard. My husband and I love to go out to eat. We spend our weekends trying new places or revisiting old. Yesterday we went to one favorite places that has a bakery in the place. Their sandwiches are on fresh baked bread. They also usually have fabulous salads, but when their homegrown stuff is in, which it is not yet. So I splurged and had a sandwich. It was fabulous. But then the temptation was on to have more “forbidden” items, which was hard to pass by. But I did. When I got home, I actually calculated the sandwich into my daily calories, and was not that far over that I could also have an enjoyable dinner. I have to learn to cut myself some slack.

This experience makes me very aware of how easy it is to overeat. People who can eat whatever they want are truly blessed. I watched what other people were eating. They have no idea how lucky they are when they are chowing down without worry. This new concern for me has nothing to do with losing weight to look acceptable. It is all about putting the right things in my body to help my kidneys. My bigger concerns are keeping my sugar low so that doesn’t impact the kidney and low protein and potassium which is hard for the kidney. That means no meats or sweets. The American diet is so based on meat that it’s hard to go out and find places that offer plant based meals. Even salad offerings have chicken or cold cuts (terrible for you).

The information out there on the Internet is so convoluted that people with kidney disease have a real struggle. I am finding that recipes that are supposed to be kidney friendly are anything but. I hope in time to be able to become very knowledgeable so that I can help others who find themselves in the same position.

My labs from May 8th showed some real improvement in my numbers. It was good news after such a plethora of bad in the past few months. It gives me hope that I can hold off dialysis.

 

 

What would Mom think?

Today is Mother’s Day. I have been thinking a lot about my Mom the last weeks. She died when I was 23. My relationship with her was not very good most of my life. I often wonder what her take was on our relationship. I also wonder why she was the way she was. Through pictures and letters I discovered a different history and that has helped me to understand a bit where she was coming from and with the way she was.

Mom was the older of two girls. I know so little about my Grandparents. We were told my Grandfather died when Mom was very young. This turned out to be not true. After my Mom died, I got her steamer truck full of things from her life. In it was a box of letters from her father to her. He left the family when she was 15 and moved back to the family homestead in West Virginia. Mom told us that he died from being gassed in WWI. Well, he was gassed, but he died in a sanitarium from chronic alcohol abuse.

My mother must have been so embarrassed that she hid all this from everyone. I wonder if my father knew. I can understand why she did.

My father’s family was very wealthy and upper class living on Long Island. His father was an ambassador from Spain and I am not sure what else he did. He died when my father was three in a tragic accident. He was crossing a rail road and was stuck and got hit by a train. My uncle was also in the car and died. My father’s mother was pregnant with my aunt. Again, not much was ever shared with us about the past. My aunt wrote us all a lovely little book when my father died about growing up. They were well to do and privileged.

My mother married into a dream. She came from Detroit and I am sure there was not much money as her mother worked. The only proof I have the early years of their marriage are pictures of Mom in very lovely evening dresses and at dinner on cruise ships. They had a nice house with domestic help and my brothers and sister grew up attending sailing classes at the Yacht club where my parents were members. Being the youngest, I had a much different upbringing as by the time I came along, the money was gone and my father lost his business.

My Mom kept up pretenses all my life. My Nana, her mother-in-law, was a lovely woman but the truest snob I have ever met. We were not close. I am sure my mother was worried her whole life that she, the little girl from Detroit with hillbilly relatives, would not measure up. I am sure she worried about her pedigree. Hence, she did not speak about it. But she played the role of the grand dame right up to the end of her life.

Her gift to me was to give me some class. I grew up learning about etiquette and an appreciation for the finer things. Our house growing up was filled with silver, crystal and fine linens. We always had a proper dinner and I learned the use and procedures for setting a formal table. All this of course is now useless, which I think is sad. And now, I have what remains of the silver and crystal and never use it. I think my mother would be disappointed if she was still alive. She gave me traditions, some I still hold on to. But my sibling’s relationships are disconnected so the traditions have morphed into my family’s own.

My Mom was diagnosed with terminal lung cancer in July of 1978 and was gone the next January. She did not want to talk about her illness. I think about that time and I wonder how she felt when she heard the diagnosis. Knowing my Father, I am sure she held back her feelings even from him. I was newly married but I spent the last two weeks of her life with her. She was in the hospital dying. They did not have hospice services like they do now. Even then, she did not share much. She did not complain about her pain other than to ask me to rub her back. As she slipped further and further away, we would sit in silence. She was the first person in my life to die and I had no concept of death.

I was the one who received the call that she had passed away. I now wish I had been there with her, but I was unaware that she was that close to death when I left that afternoon. I had to tell my father she was gone and that was only the second time I ever saw him cry. Emotional demonstrations were not allowed in my family. This is a remnant of their upper class behavior. “Stiff upper lip and all.” I never fit in that category and was constantly chided for being so emotional.

It has been almost forty years since she passed. I do not remember the sound of her voice. I only remember her face by pictures. She was the rock and glue of the family and when she passed, the family broke apart. I ended up having to take care of my father for 13 years, which was a huge strain on me. I am still close to my oldest brother, but he practices the same emotional restraint my mother had.

I look around my house and see pieces of her in my decorating. She loved flowers and taught me well about gardening. I have multitude of houseplants, much like she did. I have her love for sterling even though I hate to polish it. There is not much left compared to what we had growing up. My father sold off a lot of it and I remember being furious when he did. I felt like he was selling of pieces of my Mom.

I do not use all the china I have and now I am looking to get rid of it. I know that sounds callous but my nephews have their own or they don’t want it. There is no one to pass it on to. I have Waterford crystal that sits in boxes and other stem wear in a china cabinet. I have linens boxed and collecting dust and mold. No one wants these things anymore. My husband is content with paper plates and vinyl tablecloths.

There are other reminders of my Mom every day. She loved cardinals. I always have had a cardinal family living in my back yard. One time or another they have flown into the house. I took it as a symbol of my mother’s approval of this house.

Even being as old as I am, I do miss her, especially now. I want to ask her how she felt when she was diagnosed. I am facing my own diagnosis of Chronic Kidney Disease, Stage four, which has its own path to death. I want to know her truth. I want to know about her early years. She was only 58 when she passed. I would have liked to share old age with her. I wish she had shared more about who she was instead fulfilling some role she felt obligated to be. There were a few  glimpses of the real Mom in my late teens when my father was traveling and she would literally let her hair down.

But most of all, I would like to know what she thinks of how I turned out. And did she love me.