A journal of healing

Archive for the ‘Uncategorized’ Category

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.

Advertisements

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.

A pending disaster

People do not listen. They do not know when they are in trouble and need to do something. We have a situation in my little village that is causing a big riff and issues. I am amazed at the shortsightedness of people and the easily swayed political officials.

We are surrounded by the Erie Canal. It goes right through the heart of the village and on to the neighboring suburbs. It is what makes my village so quaint and desirable. We have waterfront. The canal is actually higher than the surround neighborhoods on one side.    

When the canal was built, they shored up the sides with a process they called a dam. It is different than a bank which is level with the canal and surrounding area. A dam is higher than the surrounding land. Without going into a lot of detail, it is basically layered rocks and soil. It was built in a specific way to be supportive. It was not built however to support trees and bushes. They are the issue.

 

For the early years of the canal, the dams were kept clear. No trees and bushes. If you look at old pictures, you can see this. Where I live, in the early years, the lands surrounding the canal were farm land. There were one or two major properties with acreage. Now the land supports hundreds of houses. They are technically in a flood plain. Many of the properties who have the canal in their backyard have many trees and shrubs for privacy. They do not own the land, the Canal Authority does.

The trees and bushes undermine the dams. The Canal Authority is looking at doing a clear cut and removing the trees and shrubs. In doing so will expose the properties to the public who use the canal path for recreation. It is beautiful to glide down the canal in a boat or ride your bike on the path. It is heavily used in this area. The removal will expose all the properties lining the path. The vegetation is mostly invasive plants and trees also. That is why there is so much overgrowth.

Some of the wealthiest people live along the canal. Some people have petitioned to stop the cutting and cleaning up of the dam embankments. They won recently putting a halt on the process for now. Stupid is as stupid does.

Several years ago, the canal split opened and poured out its water into the low lying area down from my village. So many houses had four and five feet of water in them. Fortunately, the canal was “drained” but it still had at least three feet of water in it. It was a stretch of the canal that is actually concrete because it goes over a stream. The supporting soil and sand washed out and the concrete was not supported and a fell into the stream below, flooding the neighborhood.

I used to live in a neighborhood that is below a major portion of the canal. The canal actually bends around the neighborhood. When I bought my property almost thirty years ago, the basement was dry. There was no sump pump. The basement in time became very damp. We had to run a de-humidifier. In the fifteen years living there, I noticed more dampness every year. One time, the soil in the back of the house right up on the foundation washed away. That wall in the basement was constantly damp. No one knew why it was because there was no gutter draining there or other water source on the property. I remember that the person we called to look at the basement said that there were a lot of people in the area who were having basement water issues in the neighborhood. He said it was because the water table had increased in the area due to the canal leaking. I moved into the village shortly after that. (Not for that reason)

I feel like I am in a movie when it comes to this subject. This is a disaster waiting to happen. The Johnston Flood that killed hundreds was caused by an earthen dam that collapsed, much like what it on this section of the Erie Canal. And much like the Johnston flood, a select few very wealthy men knew of the possibility and did nothing. I have been involved with a core of people who are writing petitions and posting information. I pray that someone will listen and save everyone from a disaster.

 

Change is needed

            My Doves

I lived with “gun fanatics” all my life. I found in my father’s archives a Lifetime member certificate for him. The date was my birth day. I started shooting when I was eight. I was good. I married someone who was fanatical about guns.  He wasn’t when I first met him. My father turned him on to guns. Then he started hanging out with other gun fanatics. He became a cop. His career was being the head of the firearms training academy.

Everything we did was centered on guns. Our friends all shot. Some were police, others were sportsmen, and one owned a gun shop.  Every weekend was about shooting. Even some of the women shot. I did not.

They ate, drank and talked incessantly about guns, gun control and how unfair it would be if they had stricter gun control. As time went on, the group became more militant and also more narrow minded, putting it too nicely. They hated everyone who was not white, Christian and straight. Somehow, I ended up in a nightmare. But this is not about that, it is about the mindset.

Yes, they had assault weapons. Why? I could never see the beauty in them like I good well-designed wooden rifle. My father had two collectable rifles which he used for competitive shooting of clay pigeons. He belonged to a gun club where he socialized. The group my husband hung with went to ranges or private locations which had set up assault fields. They were tactical ranges where you had to shoot around things. In all the times I went along, I never saw anyone use a military rifle to practice in competition. It was always hand guns. Why did they have the military guns? Because….. just because.

I am long out of that group and divorced. But I saw what happened and witnessed the hatred and bigotry first hand. I actually was on the receiving end of it often. Sometimes it was like living with a powder keg. The fuse was there. Fortunately, there were few kids. Most of the couples did not have children, including us. But if there had been, I could easily see how their minds would have been melted by the warped narrow thinking that permeated this clan. And they would have access to an arsenal.

I have always said and will say this until I die….there is no reason for guns in civilian hands, especially military grade artillery. (See how well I fit in before?) You want to shoot something, get a paintball gun. I also am not into hunting and see no need for that for most people. If you feed your family off of hunting, then I understand. But the group I was in all had enough money and there were plenty of stores around. Yes I understand the skeet and being a marksman and all. But then we used to throw people to the lions for entertainment. Isn’t there something less harmful you can do? There is no other activity on earth that makes sport of killing. It strips the humanity out of the significance of life.

This blog says it better than I can. https://agingmillennialengineer.wordpress.com/2018/02/15/fuck-you-i-like-guns-2/  This is a man who is an Army Vet. He says it all about why do we have assault weapons for civilian use.

We need to do something about better gun control. There is absolutely no reason for military weapons to be available to anyone other than the military. We need to have stricter control and better training for people who have guns in their homes. I agree with the concept of licensing and recertifying to be able to have guns, whether they are long guns or not.

The government can regulate anything it wants to the ridiculousness in the name of protecting the people. For example, my washing machine was redesigned to protect people from hurting themselves by reaching in the tub when it is running. Really? If you put your hand in a spinning machine, you get what you get. But they will allow a child to buy a gun. Anyone else see the problem with this?

Fighting auto-immune disease

I am in a battle of my life, really and truly. I have auto-immune diseases. It is a fight many people participate in. But for me, I have the stigma of being fat. It is the first thing that medical providers hone in on, sometimes exclusively. But now I am in another tail spin. Let me explain.

I have psoriatic arthritis, PsA, and Psoriasis, P. I was diagnosed with them after I went through a horrific time in my life. I was divorcing after twenty-seven years with an abusive husband. I had to sell the home we lived in for fifteen years as part of the settlement. I lost my job that I loved, although there were some real stinky issues there too. I basically lost everything. But I got through it and then, I moved into a great house and went back to school. My life turned out great. But my body suffered from all the trauma and stress.

I ended up in the hospital with blot clots. The clots resolved themselves and I was truly blessed because there was one very close to my heart. I was put on Coumadin for life. People were quick to say, “Fat girl has fat blood and hence her issues.” Nope. I have an inherited disease call Factor V Leiden. It comes from my father’s side. It has absolutely nothing to do with being fat. But after being in the hospital, they put me on a strong regiment of blood thinners to the point I bled out. They needed to stop my periods. That was another battle but finally I had a hydro thermal ablation.  But the anemia and other issues took a toll on my body.

I was on a path of a wonderful new life. I was happy. I met a great guy. I loved my house. Life seemed great. But this weird rash appeared when I was going through the divorce. It got constantly worse, spreading all over my body. I itched. I went to the dermatologist who had no idea what it was. I also noticed that I was having pain, achy pain in my joints. Not enough to slow me down at first. I used to play tennis three times a week, mow my lawn and walk all over the place. I had always been a large active person.

I was teaching at the time and some days I could not stand for very long and walking became painful. I bought ugly shoes and went to the doctor. Her diagnosis was I was fat. “Lose weight” was the prescription and take Advil. So I took mega doses of Advil. Finally, when my hands started to turn into claws, they paid attention. I would sit and cry for hours from the dull burning that radiated in my body. It is hard to explain the pain to anyone who does not have this disease. My skin looked like I had the measles and I would scratch to the point where I would wake up with blood stained sheets from scratching in the night. I did not sleep for more than two hour blocks.

I was tested for rheumatoid disease and came back with a confirmed diagnosis of PsA and P. My life changed completely. I went on prednisone, methotrexate, and continued with Advil when needed. I felt better, but the results from those drugs impacted me in a bad way. My kidney crashed. I lost all function on the right kidney. I had been peeing blood for months, but they said it was the Coumadin. It wasn’t.

My glucose has always been low, much to the chagrin of doctors in the past who expected high glucose because I am fat. We do not have diabetes in the family. My A1c went from 5 to 13. Hello!!!  I also gained 30 pounds in a very short time. They took me off the prednisone and then the methotrexate. I would get very sick after I would take my shot. My body was telling me to stop. Next, they tried me on Humira, which did nothing, and then Enbrel. The Enbrel worked for 8 years. I started getting horrible cramps everywhere in my body and the pain came back. I also slowly put on weight that would not come off. This also is a known side effect of Enbrel. All the drugs I have taken, except Otezla which made me feel sick all the time, are known for weight gain as a side effect.

For the next three years, I went through a series of taking every drug on the market for PsA. I had horrible reactions such as feeling hung over to not being able to walk from the pain. I had horrible IBS brought on by these drugs. I could not go anywhere including going to work in the morning without the fear of crapping myself. And I had a few episodes where I did. It was humiliating and horrendous.

My kidney that had gotten better was starting to decline. I passed over 50 kidney stones. I have about twenty in a box. Some were huge and the doctor took them. They were all uric acid based stones which is a product of PsA. There were stones in the right kidney that were too big to pass. I spent days in agony when I was passing a stone, but I still went to work. I passed one at work. Talk about a high pain threshold.

In 2016, we decided to try Humira one more time since it was all that was left. It almost killed me. My glucose steadily inclined, my kidney function declined and all the while I was steadily gaining weight. I was miserable. It is hard to understand the frustration and discomfort of not having control of your health. And mine was getting worse in the name of drugs.

Finally, last year, I was put on the most expensive PsA drug out there: Stelara. One shot costs $20,000. I had to exhaust all other options before the insurance would cover it. It is a miracle. I have little to no psoriasis. My PsA pain was vastly better. But by now, I have lost a lot of my stamina. There is damage in my joints that will never repair. I need to have my one ankle fused but I refuse. I have damage in my spine and hips. But I had the best mobility with Stelara. I have been on it for a year.

Because of the elevated glucose, the Doctor put me on Januvia. Januvia passes sugar out the kidney. Not a smart choice for someone with kidney disease. He finally changed it and I am on a new drug which is not really working and my A1c has risen again. I got a note from the nurse from my doctor’s office saying, “the Doctor wants you to watch your diet. Eat less carbs and sugar.” I was so pissed and will say something when I see him.

I just went and had my blood tests done. I am in big trouble. My kidney function is now stage four CKD. There was a slight improvement since I retired, but not enough to put me back to stage 3. My blood pressure has been up and now I have awful cholesterol reading. It has jumped up 114 points in one year. My cholesterol has been normal most of my life.  Both the BP and cholesterol is due from the Stelara.  It is a known side effect.

So now what? I do not know. I see the doctor on Friday. I swear if he says it’s because I am fat I am going to walk out of the office. He usually is pretty good about things. I would have to be eating pure fat for that amount of increase. And, I don’t eat a lot of fat. I do not even eat meat. But I should not have to justify myself but I will be ashamed because that it the reaction I have. I will be made to be guilty of gluttony. Meanwhile, I have a situation that needs to be dealt with. When you have Factor V, the last thing you want is more reasons to have clots. And when you have high cholesterol, it also raises you blood glucose, which has been an issue with all the drugs I am on.

I feel out of control and I admit, very depressed. This was supposed to be a happy time for me since I retired. I will say that I am much more active than when I was working. I spend most days working on physical projects in the house. My mobility and stamina is much better.  I have noticed the difference. But I am scared that my recourse is to come off the Stelara, or take more drugs.  It is like being a prisoner in your own body.

 

Hatred: a Learned Behavior

Currently I am reading “Shrill”, a book by Lindy West. It is not for the easily offended reader. She is a comedian and is very funny. But she is also FAT. Lindy is a true Fat activist and writes for about the struggles she has. She deals with hate every day. But she wants to change the world and I think she has many valid points. She says, “Being fat is like walking around with a sandwich board that says, “HERE’S WHERE TO HURT ME!” That’s why reclaiming fatness— living visibly, declaring, “I’m fat and I am not ashamed”— is a social tool so revolutionary, so liberating, it saves lives.”

When I was growing up, bullying existed but it was not exonerated. Bullies were known. They were outcasts and shunned, unless you were one. As a child, you learned to fight back or suffer. Parents did not fight your fight for you. You could rat out a bully if you dared and they would be “in trouble,” which meant something in those days.

Today’s culture is very different. I blame the media who created movies like “Mean Girls.” Then we have TV shows like the “Biggest Loser” where they abused Fat people for entertainment. There was nothing real or entertaining about that show. There is one out there now called “My 600 Pound Life” about very large people who are suffering and struggling to just survive. There is nothing entertaining about witnessing suffering. But it creates absolution for the hatred of people of size and fosters bigotry.

Lindy talks about flying and the stigma attached to Fat people when they board an airplane. I have sat in seats that do not fit me. It is humiliating at best as well as painful. And my butt is not as big as a Kardashian. I love Lindy’s retort: “We don’t insist on a solution because it’s still culturally acceptable to be cruel to fat people. When even pointing out the problem— saying, “my body does not fit in these seats that I pay for”— returns nothing but abuse and scorn, how can we ever expect that problem to be addressed? The real issue here isn’t money, it’s bigotry. We don’t care about fat people because it is okay not to care about them, and we don’t take care of them because we think they don’t deserve care…..We don’t insist on a solution because it’s still culturally acceptable to be cruel to fat people.

We are not born hating people different from us. Babies do not see Fat people as a threat. They learn that from their parents. My parents hated Fat people and had no issues making hurtful comments my whole life. Their mothers hated Fat people too and passed that down. They had no reason to hate fat people. They also hated people of different religions and especially hated people of color. They had no tolerance for anyone different from them, actually. They were upper class snobs full of themselves. My siblings to some degree reflect the same thinking. I never did learn the behavior and was an outcast in my own family sphere. But I held true to my principals.

We live in a country where hatred, bigotry, misogynic behaviors are being tolerated and actually glorified by some. But we are starting to have people who are standing up and saying no more. We have to do this. The energy of hatred is toxic. We have to change what we teach our children. I am aghast at the comments I hear from young people that are vile and filled with prejudice of things and people they have no direct experience with. How is that possible? Because hatred is a learned behavior and we have to stop teaching and accepting it.

West, Lindy. Shrill: Notes from a Loud Woman (p. 148). Hachette Books. Kindle Edition.

 

 

 

 

 

 

 

 

Fat Hatred

This weekend celebrated the second Women’s March in Seneca Falls. There were over 10,000 people there to voice their concerns. Voicing concerns is everyone’s right in the USA. I support that right as a woman and as a blogger. I am not able to accept and even understand what gives people the right to go on to someone’s blog and write an evil and threatening message. It happens all the time and to totally innocuous blogs.

Blogging is the opportunity for the blogger-author to express their thoughts. It is therapeutic at times and it can be a gift of education or just simply an outlet for the blogger to write about their experiences. It is a wonderful outlet.

I follow several blogs. There is one I find at times quite humorous called Dancing with Fat by Ragen Chastain. She is a large size lady who writes, is a triathlete, and a dancer. She also is a motivational speaker who encourages people of all size to be the best that they are no matter what their size. She is a true hero for the thousands of people who let their size inhibit their lives.

There are many other activists who are trying to simply educate people about size discrimination. It is totally acceptable in our country if not encouraged to harass and bully people of size. I do not get it and never have. But I was astounded by the hatred these activists have had hurled at them on their websites and even face to face.

In Regen’s blog she talks about trolls. She actually created a website and posted some of the comments and her very funny and witty replies. The comments are graphic and threatening and just frightening. She has never hurt anyone or tried to change anyone. She is only offering a glimpse into her life with joy and support for others. Pardon the language of this, but this is an example: “cant we just kill the fat people and make cat food out of them? 99% of obese people are just stupid lazy ugly pieces of lard,fuck em”  Can you imagine how this makes me feel as a large person to be judge that I should be KILLED and made into cat food simply because I take a larger dress size? Of course the sentiment loses value in the quality of the rant… and we move on. But how horrible is it that this person is out there expressing that much hatred and violence to an innocent group of fat people. Really? There are a lot more worthy groups to hate if you got to hate.

I am so naïve even at this ripe old age. I never knew there was so much hatred against fat people. This hatred is a learned behavior because it is not embraced by everyone in the world. What difference is to anyone if a person is large or small as long as they are not hurting anyone? This issue is becoming more prevalent now because people are standing up and saying “STOP IT!” Count me in!

We would never tolerate this type of harassment and hatred towards people of color. But I lived with that hatred growing up and I still hear it whispered behind closed doors. The fact is now it is unacceptable to slur and insult people simply because they have different skin color. It was an arduous fight. I am not saying the fight is over either. But when I was a young child it was a segregated world and it was nationally acceptable. But no more. It gives me hope.

I am not going to go on a political rant here. It would be too easy. Change has to happen. We need to be aware of this hatred in order for it to change. People don’t like to get involved in controversy and we have become a nation of complacency, which is why we are where we are with the leaders we have.

My goal is to just point out something that many people might not even be aware of. Next time you sit next to a fat person, understand that they know when they are being ostracized. They can see the looks and feel the shame you want them to feel for just existing. In many cases, their size is their protection from the harm and hurt their life has been. Try to understand and not judge.