Fall endings

It was a wonderful summer. It was the first summer I have had off since I was a high school teacher. I thought I would be bored, but I was far from it. I probably did more reading than I have done since I was in college. I also had one of the best gardens I have ever had. I had time to water and weed it and I was constantly tending to the plants. But now fall is upon us and I must say good-bye to the garden for the winter.

This is very difficult for me to do. I hate watching the plants wither and die. We have not had a frost yet, but when we do, the impatiens that are left will be melted in the morning. The squirrels have been burying nuts in the pots and so many of the plants are already destroyed. I think all the nut planting is a sign we are going to have a tough winter.

The trees are just starting to drop their leaves. The yard is completely private with the canopy of shrubs and trees. It will feel so exposed soon.

But I know that this is the cycle of life. We all come into the world for a short period of time. The purpose is to spread joy and make the world a better place. I think this is a life purpose of all things. I also believe everything has a spirit and we are all connected. I feel very connected to my garden and all the animals that live and visit in it.

This fall is going to be very difficult for one of my friends. Her husband has just been diagnosed with end stage cancer. There is no hope, no future.  He will be here for only a very short time. He is in the fall of his life.

I have been thinking about my friend and her husband constantly. What would I do if I was her? What would I do if I was him? Getting a diagnosis like end stage anything is horrible. She has been so strong and I hope she knows she is surrounded with love. I wonder though how I would feel if I was told I had a month to six to live. What would I do with the time?  How angry would I be?

I have spent time in quiet reflection just thinking about that question of what would I do? My mind cannot process it. I have even discussed it with my husband and we both came up with a few lame ideas, mostly travel. But what if I could not travel either?

Reality hit me square in the eyes. We should all live like we are in the fall of our lives, because in essence, we are all dying. We should not live with the concept of ignoring that fact nor should we give up because of the inevitable end.

We should live with gusto and a fullness of life every day. It means embracing every moment because each one is special and it will never be the same. We should celebrate ourselves and our relationships because they are work we have done. Life is full of ups and downs and the fact that we have survived the ride is success in itself. Nothing comes into this world without leaving an imprint somewhere.

 

Serious car issues

We are having a serious issue with my husband’s 2018 Equinox. The car has less than 7000 miles on it. This has happened three times and I have been there for two of them. He will go to brake and the car will not stop. It will slow down, but the engine will race and will over power the brakes. The car will roll forward and he cannot stop it.

The first time it happened when I was in the car, we were at a complete stop in line to cross over a toll bridge. He went to move up and the car started to race and he could not stop it. I sat and watched as he tapped the guy ahead of us, badly damaging the license plate. It crumpled because he hit their trailer hitch. Better that than the hood of the car.

The last time was yesterday as we were coming home. He was slowing down to pull into the driveway. We had spent the day driving all over. As we turned to go into the driveway he said, “Look, it is doing it again.” The engine RPM indicator was pegged at 5 and you could hear the engine racing. He calmly put the car in neutral, which allowed the brakes to grab and then the engine stopped racing.

We have taken the car to Hoselton Chevrolet Dealer, where we bought the car. They had the car for two days and said they could not find anything. They said they called Chevrolet to ask them and reported that there was no record of any issues or problems with other vehicles. They fed the diagnostics to them, I hope. They said nothing was wrong. This was over two weeks ago.

Yet, this week Joe got another recall. I do not know what this recall is for but the car is going back.

I am writing this in the attempt to publish this and see if anyone else has ever had this issue and to document it. I am then going on a campaign to get this fixed.

It is terrifying to sit and watch the car take control. This is why the car is now called Christine.

Why, oh why…Questions I have.

My questions for today are: Is it possible for women to have a conversation and not talk about diets? Would it be possible for restaurants to consider that not everyone eats meat or tomato sauce? Why is it so hard to stay on your diet when away?

We just came back from vacation. It was a lovely trip to our favorite place in the 1000 Islands. We go every year at least twice. We do not really have cooking facilities in the room we are in. So we are required to either get take out or eat out. Actually, that is part of the beauty of the trip. Usually, we buy snacks for the room also. Now that I am required to watch what I eat, we limited the snacks. But I did buy a bag of Fritos and I had my favorite River Rat cheese. (I did end up feeding the Fritos to the geese and other animals there.) We ate cold cereal for breakfast in the room every morning. I don’t normally eat cold cereal. In the past I have brought an electric kettle so I could make oatmeal, but that is now only allowed on a limited amount on my renal diet. Cold cereal was the only option for this trip. Not a good thing.

Every morning, people around the world pour a bowl of sugary carbs and cover it with milk. For me, the carbs in the morning are really bad. My sugar elevates at the middle of the night, instead of coming down like most people and then by mid-day, it is in a normal range. I use long acting insulin with a bigger dose at night and a smaller one first thing in the am. I do not take insulin the rest of the day. When I ate cereal, my reading never came down and my overall sugar stayed pretty high. On top of that, milk has sugar as well as phosphorous and potassium which is not good for the kidneys.

When we were shopping at the store, it was hard to find any for breakfast that would have been a good substitute. We did buy some dark homemade bread at a shop and lite butter Again, bread is high in carbs. Forget about croissants, or god-for-bid donuts. I do not ever eat donuts.

I wonder if eating cereal as kids is a contributor to having diabetes as an adult. At home, I never eat cereal. I scramble two egg whites and one whole egg and sometimes add pre-cooked veggies. I have very low cholesterol so this is not an issue. My solution for our next trip was to buy a small egg cooker.

The other big problem was eating out. The place we stay has a wonderful restaurant with a fabulous salad bar. The first two nights they had a buffet. BIG MISTAKE. Even though I thought I was being judicious, I over ate. I skipped the buffet the rest of the trip. Two nights they had all you could eat pasta. It was cheaper to buy that dinner than the salad bar alone. I had pasta with alfredo sauce on the side. Yummy…but terrible for me. But, I was on vacation and in my head I justified it. We had other meals when the restaurant was closed and I tried to pick something with no red sauce and only chicken. I ate more chicken that week than I did all summer. A couple of times I only ordered salad but they came with chicken. It is almost impossible to find renal friendly meals in restaurants. If it doesn’t have pasta it has potatoes. Ordering a side of let’s say just broccoli is not a good option often because the broccoli is usually frozen and mush.

I had labs done the week we came back and my numbers were terrible….. well, I thought they were. My nephrologist said they were not that awful and to stop worrying. I already lost the five pounds I gained, and my glucose readings have come back down. But it did frighten me when I saw my GFR dropped two points. My goal is to get that back up.

Last night we went to a function at a restaurant. Again, it was a buffet. But they had big bowls of salad on the table. I was planning on having salad since they buffet was not renal friendly at all. I did pick though the broccoli and pasta and took just broccoli and had a small piece of really bad chicken French. The rest of the buffet was pasta in red sauce, veal parmesan, and roast beef. I filled my salad plate when I went up to the buffet and when I got back to the table; they had taken the big bowl of salad away. I was really mad. So for $40.00, I had the worse meal.

The function was for my hubby’s 50^th school reunion. I knew no one there at all. I went to support him. After dinner, people were milling around and several people came and chatted with us….him. One other wife and I struck up a conversation as the men were chatting. We talked about what we were doing in our resent retirements. The topic never came close to diets until I mentioned cleaning out closets. Then she somehow got on a track about weight.

I don’t know if it is a female thing or because I am a large woman that people feel that have to talk about weight and diets with me. She started down a path of how as she aged she put weight on….. Truthfully, I don’t remember all that she was saying in detail as I tuned her out. I finally looked at her said, “I have been large all my life. Now excuse me, I need to go to the ladies room.”

Why do women NEED to justify their bodies? Also, why do women have to explain when they are at a dinner why they are eating what they are eating? My thinking is, “shut up and enjoy yourself. I don’t care what you eat and I certainly do not want your guilt or judgement.

No one ever said to my rather large husband, “gee… I put on weight as I got older.” If anything a male conversation last night would have been would be more about lamenting about hair loss. I did hear that once with one guy who was talking to my husband. His hair was almost gone but my hubby has a full head of hair. Both of them just laughed.

 

A Pissy Situation: Is it really only about weight loss?

It has been four months now since I heard the news that I was stage four chronic kidney disease (CKD) and was facing a future of dialysis. The news was devastating and put me in a funk for many weeks. My reaction was to be expected and should have had better support than it did. I have discovered some very sad things about the support system out there for people with kidney disease.

The first thing I discovered was there was no local support group. I asked at the local Kidney Foundation and they said no, they did not have any physical support groups in the area. They said they offer on-line support. And there is peer mentor support through phone conversations. So I signed up for both.

The phone support was nice, as the lady I was paired with was very understanding. Her situation is nothing like mine as far as the kidney situation, but we did have other things to chat about. We did five calls and both decided that we were not going to continue them because there was not much more she could do for me. She agreed that she really was not a good choice for my situation. She is a two time transplant patient and was never overweight or diabetic. She was also born with kidney issues and had her first transplant at 17. I found that the person from the Kidney Foundation who paired us never listened to my diagnosis or my background when I was interviewed for the mentorship.

The on-line support group is also very limited. There is one person on the site who thinks he knows everything in the world about kidney disease and is as pompous as they come. Now it seems there are only about four of us who use the site regularly and it is not really helpful to me.

One of the things I posted was about trying to get some support about my diet. As expected, Mr. Kidney (his user name for the site…really) came back with a lecture about how successful he has been losing weight and not much advice for me. This is basically what I wrote:

I have a situation where I could use some help. I have the following medical issues. I am diabetic. I have psoriatic arthritis which causes me to have high uric acid. I have diverticulitis (also from the PsA). I have Stage 4 CKD with a GFR of 24 and creatinine of 2.09. I had high protein but have brought that completely down into a normal range. And I need to lose a significant amount of weight.

Here is my dilemma: I do not eat red meat at all (since 1986) and I have stopped eating for the most part chicken, turkey or fish. I do not eat tomatoes, potatoes or other CKD no-no fruits at all. My main consumption is salad and fresh vegetables. However, much to my dismay, I am having now issues with the large amount of lettuce because of the diverticulitis. I have limited bread, rice and pasta because of the carbs. I am not into lentils and do not eat beans. I stopped eating cheese for the most part because of the calories and no sugary desserts or baked goods at all. I was substituting zucchini noodles, but found out they are very high in potassium which I have to limit along with phosphorous.

I was eating a lot of cauliflower which now I have discovered is high in purines, which causes high uric acid. I limited broccoli for the potassium and also other high potassium vegetables such as any squash. I do eat eggs, but I am trying not to eat them more than three times a week and when I do, it is mostly egg whites (which is not very satisfying)

 I do count my calories and try to consume at least 900 to 1000 calories a day. I have had to add more pasta for calories which of course is counterproductive to weight loss and carb counting. I have lost 21 pounds since May and I am glad with that, but believe me, it is just a drop in a very large bucket.

Anyone have suggestions as to safe choices for food for me?

Of the four people who responded, they had nothing new to tell me. One person came back with a list of foods that are totally not acceptable for kidney disease and were high in fat and potassium. Most responses were about exercise. Hello…..this was about what I could eat.

Does anyone read?????

I am pretty frustrated with this whole process. From the first class I took with the arrogant nurse who spent her lecture time telling me about her personal diet journey to the lack of true support for newly diagnosed CKD patients.

The world is focused on diet and weight loss. And when you enter the clinical world, it becomes extremely myopic. Just recently, I read an article on a lovely lady who just died at the age of 64 from cancer. It seems that she had been seeking help for years with her symptoms and was only told about her weight issues. “Lose weight” was the only help they gave her. They did not run the proper tests on her until she pushed extremely hard and someone listened. Unfortunately, at that point, the cancer was inoperable and she was doomed.

The other thing that does come up in my reading and research is that doctors do not consider someone having kidney issues until they are in late stage or 3b kidney disease. That too was what happened to me. I should have seen a nephrologist and a renal dietician earlier. I was actually in stage 3a in 2013. My PCP doctor was also more focused on the weight and the diabetes, which is actually painfully ironic. He changed my medication for the diabetes last year and it did not work. My glucose kept climbing and he kept telling me to wait. Finally when I was having readings often over 300, I put myself back on the medication (I had saved the previous left over medicine) I was on before. But the damage had been done and my GFR reading went down to put me in Stage 4 CKD. I also put on more weight, again counter- productive. But then he gave me the referral to the nephrologist. She then gave me the referral to the renal dietician. Again, ironically, the foods that I had been eating to try to lose weight were not good for the kidney.

I will wonder for the rest of my life wonder if I had seen someone earlier if I could have saved my kidneys. Probably not since the reason for the damage is from medications for the psoriatic arthritis. Nothing like being held hostage to a bad situation either way.

But in spite of this all, I am doing better. My kidney function has stabilized for now. I am having more normal readings on my labs and actually brought my GFR up a point (which is rare). I have lost weight which make me happy but not because of appearance issues, but because I feel better. I don’t give a rat’s ass about what people think about my size.

Kidney disease is a frightening disease that affects millions of people. I feel so bad for the people who are newly diagnosed and are not computer savvy or do not like to use chat boards. I am so sorry the one they offer is so limited. The social network sites are terrible and not populated well with good information. There is an abundance of terrible and inaccurate information on foods and diet which can be potentially damaging. There is, of course, a plethora of snake oil sites which offer immediate miracle cures. There are many, many organizations out there that are reaping big bucks off of donations. I do not see it coming back to the patients however, at least not locally.

I have taken classes to be a certified Kidney Coach. I offered on the chat site to become an ambassador but was told I needed to participate longer. I am going to become a phone peer this fall and will probably seek other ways I can use my teaching background to help others. I see my nephrologist in a week and she is going to get an earful.

Pissy Situation: Diet or lifestyle change

“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.

A tribute to my friend

  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.  

 

 

A Pissy Situation part six: Selective survival

“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.

 

 

A Pissy Situation, Part Five. You scream, I scream for Ice Cream

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.

 

A Pissy Situation part four: You are what you eat.

     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 8^th 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.