A journal of healing

    So in my last blog I wrote how and why I am now facing a life altering situation. I have stage four kidney disease and it WILL progress to end stage renal disease and death. The solution is dialysis and a major change in the diet. After I met with the nephrologist, the next steps were a dialysis class to learn about options and what is entailed and then a meeting with a renal dietician. I was not looking forward to either.

The day of the class, I got there early. There is one thing I am seeing and that is there is a lot of money to be made in kidney disease. Fresenius is an organization around here and all over the world actually that has dialysis centers. They just opened a center very near to my house which is amazing and telling. They have lots of money. The class was in a Fresenius office suit that was beautiful and had all the wow factor of furniture and decorating. It was, however, lacking anyone at the main desk and no one showed up until I had sat there for a half hour. The “class” was just me and one other poor woman and the nurse. She was very polite on the phone but she took one look at me and that was it. I disappeared as fat people do.

She went over the different way you can get dialysis. She explained how you have to have surgery to have a place constructed for the hook up. Hemodialysis is where you hook up to a filtering machine and your blood is basically washed of toxins. They normally hook you up in your arm after you have had a fistula placed where they have combined your vein and artery and make it stronger for the constant needle placements. Sometime they have to put in a fake vein and artery connection. Once you start this, it is for life. You go to a center three times a week. If you can, you can do it at home and you can do it four times a week.

Then there is also times when they connect you for dialysis by placing a tube in your heart and you wear a port on the outside of your chest. This is done mostly in emergencies and is meant to be temporary. You cannot shower or get or it wet. It is not sustainable.

Then there is peritoneal dialysis. This is what the other woman is going to get. She is thin. I am not. The perinatal dialysis is not for fat people and the nurse made that very clear to me. They put a tube in your peritoneal cavity and you simple put solution in and then wait. And then drain the solution out. You can do this why you are sleeping if you sleep for 10 hours. That’s how long it takes. You have to wait hours in between putting the stuff in and then draining. And you have to do this every day for ever.

All of these are life sustaining with different projections of mortality. In the end, they fail… or should I say in most cases, your heart fails. All of these really stress the heart and cardiac issues are the primary cause of death. Whoopee… are we having fun yet?

The ultimate solution is a transplant. She did not go into great detail about that other than to suggest we register with the local transplant group associated with our medical providers. I had already discussed it with my doctor. Bottom line…. Forget-about-it. They do not do transplants on fat people. There is one place she said she knew of in Cleveland that will do the surgery but that’s it. And that is when they would even offer you the kidney, which is slim… no pun intended.

The nurse instructor started the class by telling us she was the ultimate authority on renal dialysis and I quote” I am the Guru.” The arrogance of clinicians is something I abhor as I had to put up with it constantly at my job. However, being the shit I am, I threw something at her using my very limited medical knowledge and she had no clue. Scary. At that point, I was so done with being ignored and dismissed. She started to go into diets and what you can eat on dialysis as the other lady asked her. But when she started in on telling me about how she just lost sixty pounds and the fight she had to do it…. I was done. I left the class. There was more to come but I was either going to cry or smack her. I went to the car and cried.

The point of me taking the class was to become informed. My doctor said I had time to take it when we got closer to dialysis, but since I am a worry-wort and need information, she said to go now. All it did really was make things worse. The images of the needles being jammed into my arm and drowning now were becoming constant visitors in my attempt to sleep at night.

The next thing I needed to do was visit a renal dietician. The word diet makes my back stiffen. The information out there is so confusing on what to eat and so forth, especially for kidney patients. From what I had read, I was pretty much poisoning myself with my dinners of chicken and Brussels sprouts. I had eaten that at least three times a week all winter. I do not eat read meat and haven’t since 1986. Since all this mess has also made me a diabetic, I am extremely limited on what I can eat. Kidney disease had new limits such as potassium and phosphorous intake. Who knew that vegetables and chicken have large quantities of potassium? I did not. So I was looking forward in a way to meet with this nurse.

She was lovely. At no time did she shame me in any manner. I will say I started out being defensive but she totally disarmed me. The bottom line is there is a lot of conflicting information out there and it is also outdated. Anyone who is facing a need to alter their diet should meet with a certified dietician.

I had to provide her with a food journal for three days. We also talked about what I eat. The bottom line is that I was actually eating a good diet for the most part. She feels, and I have to agree, that the elevated potassium is from the medications I am on and not from what I eat. She also said something I have NEVER had anyone tell me. I do not eat enough.

I am going to do more on the topic of diet after I have done more research, but this is what I have learned so far. Since I can remember, I have been on a diet of some kind. When I was a child, my mother forced me on a diet of green beans and Jello. Seriously! Now-a-days, that would be child abuse. Every time I went on a diet, I messed up my metabolism. The Dietician explained it as the “Tea and Toast” syndrome that old ladies employ. Once you restrict your body to a modified intake, the body adjusts and lives on it. The body holds on to fat as storage because it thinks you are trying to starve it. We all have a set-point of weight where our body wants us to be. Once we start to lose weight, it will shut down the furnaces so to speak, and not burn fuel so much in order to preserve our body weight. We keep feeding ourselves less and less and the body says, “oh hell no,” and shuts down. That is why you plateau when you go on a diet.

And what do you do? You cut out even more and the body again shuts down. Now you are running on 1000 calories a day and guess what…. You are doing more harm than good. Your poor body does not have enough fuel to run. You are cold and crabby and irritable. Now, because living like that is not sustainable for most people, you go off the diet. But your body used to running on 1000 calories and you are now consuming 2000, which is more normal. But your body says “over load” and you gain the weight back and then some. And when you gain the weight back, it comes back as fat. And we do this over and over.

Well, I am a perfect picture of what happens. Once when I was on Weight Watchers I gained weight. I took my WW food journal to a dietician and she said there was no way I should not be losing weight on this food intake. Weight Watchers and all the diet industry know that the cycle of losing weight and gaining weight is big business because of the constant failure rate. If it was successful we all would be thin and they would cease to exist.

The other factor that many people face who have kidney disease is that you become diabetic. And once you are diagnosed, you are then put on huge doses of insulin to bring down your glucose levels. Insulin is a growth hormone. Can you guess what happens? You gain weight….. Copious amounts and it gets worse and worse because the more insulin you take the more you become resistant to it. I will have more on this as I am doing a lot of research.

The Renal dietician gave me some great information on what to eat and what to watch out for. She recommended that I go to as much of a plant based diet as I could. That will not be hard for me as I already do not eat meat or much fish. I have already switched to a Faceless Diet. If the food at one time had a face, I am not eating it. She then told me according to what I am eating, I am not eating enough. Wow, I was shocked. She said I needed to add more to my diet but to be careful because I will gain because I have restricted myself for so long. There is a lot of research out there in this very topic of resetting your baseline metabolism set point.  I need to do more reading and I will probably set up another appointment with her. As it was, we had talked for two hours and I was exhausted.

The bottom line is to preserve the kidney function for as long as I can. I am at about 23 % function. If can sustain that, I will be ok. I am not going to run any marathons and I will have to be careful not to stress them anymore. The research I have read is not that hopeful. Basically the kidney is operating at a huge loss. There are only 23 of the “workers” doing the job that 100 were doing. Eventually, they give out and go on strike and QUIT.

There is good news in all of this. I am feeling a lot better. In the beginning of the year, I was getting so short of breath that it was awful. I could not do anything without panting. After climbing the stairs I would need to sit down. Once the weather broke, doing anything outside would have me coming up short of breath and I would need to sit. My blood pressure would go up and I could hear my heart beating in my ears. Now, I do not need to sit coming up the stairs. I can work in the yard and have been doing so. I am not so constantly exhausted. The supplements are helping, the less stress is helping and just the small modification in my diet is helping. At least I think so. The next labs will tell.

Until next week.

Advertisements

I have been putting this post off long enough. I wanted to tell a few people to their faces but that does not seem to be happening. I feel like I am about to burst and I need the release my blogging gives me. I have been writing about my life now for over six years and now it is time for me to write about my death. Yes, that is correct. I am coming into a phase that everyone eventually arrives at. It is all a matter of time. Mine has just been defined a little more accurately. This may seem dramatic, and it is. But I am not going to soften this because it will make it easier for others. Nope! This is about me, totally me and what I am feeling.

In 2006 I was diagnose with Psoriatic Arthritis (PsA) and Psoriasis (P). It took over two years for the diagnosis because I am fat. I went from someone who played tournament level tennis three times a week to someone whose hands were claws and could not walk. Everyone blamed the fat for the joint pain. Finally, when my hands curled up, I was sent for tests and to a rheumatologist. Oh boy, did I have inflammation. I did not develop the psoriasis like anyone else and so they misdiagnosed that as well. They said it was a form of hives and it was everywhere. Now, they know what my type of psoriasis I have.

Why did this happen? I truly believe the trauma of going through a life altering situation triggered it. I was going through a divorce after 27 years of a miserable marriage. I had to sell my house as part of the divorce and get my own place, which I did. But then I lost my job the day after I signed the mortgage. It was so terrifying for me. I only had the support of one or two good friends to get me through it. My social life had been based on my husband’s circle.

It was like a cascade of failing health thereafter. About a year after I moved in to my home, I had an episode where I might have had a mini stroke. I went to the hospital and they discovered five blood clots, including one very near my heart. I have written about this before so I won’t at this time. The diagnosis and the whole event probably saved me from the grave fifteen years ago. I have an inherited blood condition called Factor V Leiden. My blood clots too much. My father had it, his mother, and my brother has it. I was fine and have been on a blood thinner ever since. But this led to a gynecological issue which required more medical attention. But for over a year, I would bleed out during my monthly. I almost had to have a transfusion. All of this was over the course of two years.

Meanwhile, my body was revolting with inflammation. There is a strong correlation to stress and inflammation. During these years I met my now husband who moved in with his 13 year old daughter. We both went back to college and we were working a multitude of little jobs to get by. His daughter was not happy and we had to contend with her mother who would not stop interfering. We eventually shipped her off to her mother in California which was the right thing to do.

So back now to 2006: Once I was officially diagnosed with PsA and P, I was put on huge doses of methotrexate, prednisone, and Advil. About a year in, I started to have cranberry colored urine. The doctors said it was from the blood thinner. They did nothing and I stayed on the drugs. Meanwhile, I was putting on weight like crazy. Finally, a blood test revealed that my A1C was 13 and the other labs were indicating some kidney issues. They actually told me to diet. Really? I went from to low blood glucose with an A1C of 5-6 for most of the time since they tested me to 13 and its diet? I finally got to the rheumatologist who said looking at my labs, “did anyone tell you your kidneys crashed?”  They did not.

For the following years I was on just Enbrel for the PsA. They did nothing else. My glucose went back down although not where it was. Everything seemed to be ok. My physical ability was never the same however. Then I started passing kidney stones. I am talking rocks. I passed one so big it made my doctor cringe. I passed over 100 stones. I never went into the hospital. I just suffered on my own. They found five rather large ones in my right kidney and said there was nothing they could do. They were so large, they would never pass. They put me on Allopurinol finally only four years ago to help with the formation and it did help. But the damage was done.

It seems that these kidney issues are not uncommon with someone with PsA. The disease changes your blood chemistry to be more acidic, and uric acid is formed in great quantities. The stones I passed were all uric acid based. Think battery acid for piss. All of this can damage the kidney if left unchecked. I was unchecked for too long.

On top of that issue, about four years ago the Enbrel stopped working. I had to go on something new. I went through eight different highly potent biologicals in an attempt to improve my condition. They all had horrible side effects. The worse was chronic diarrhea. I had it so bad on one drug I could not drive to work without an issue. Work was only 20 minutes away. One morning I had to pull into a park and shit against a building. There was a Sherriff on the other side and if he had gotten out and walked around I would have been arrested. I exploded three times at work, once covering the bathroom that the CEO used. It was intolerable. They all made me sick and they did not help the PsA or P. I was getting covered with splotches and my hair was falling out. I lost  a lot of my mobility and started to need a cane.

In 2016, I was put on Humira. It did nothing for me and I had to use Advil to be able to walk. I was not taking big doses of Advil, but I should have been told to take none. The doctor knew I was taking it. The Humira gave me such issues that I had to see a cardiologist. They found nothing wrong and I finally demanded I stop the Humira. In 2017, I was put on an outrageously expensive shot called Stelara. My world changed immediately. The psoriasis was gone. The PsA was less and I felt like a human being again.

My labs were indicating things were not as rosy as I felt. First my A1C started to climb again. My blood pressure was getting very high. I put on weight, as I did with all the drugs. But the kidney function was declining. In September of 2017 my GFR (which is the measure of output the kidneys are functioning at) was down to 23. I had been there once before when I was passing a huge kidney stone and I got it back up to about 40. The GFR is saying that my kidneys were functioning at about 23%. Not good.

I decided I needed to change my life. I needed to destress. My job had become horrible and intolerable. I did not need it. We had been planning on my retiring anyways in another two years. I took the leap.

The next lab which was a month after I retired my GFR went up two points. I had made the right decision. But I felt like crap. I had little energy. I was short of breath on exertion, which was something I never had before. I was sleeping terribly and constantly tired. My PCP wanted me to see the nephrologist to see what she had to say. It took three months, but I finally got an appointment.

In the beginning of April my labs were God awful. I have enough medical background to know I was in deep doo doo. I had my first meltdown of what will be a series I am sure. My A1C had gone up a lot, and other readings indicated something was going on. Since I was put on the Stelara, my triglycerides were climbing and they were now three times what they were a year ago and at a dangerous level. But the worse part was my kidney GFR went back down 2 points.

I took my husband to the nephrologist appointment because I knew it was not going to be good. It was not good. I really like this doctor and had seen her way back in 2009 when I had my first issue. She told it like it is and what I am going to have to face. It was shocking to tell the truth and to face mortality is the worse feeling in the world.

This is the bottom line: I am facing dialysis. It may be in a year or less, or it may be two years. But it is going to have to happen as I will die otherwise. Once I am on dialysis, the prognosis is five to ten years. That is for someone who is healthy otherwise with no comorbidities. And yes I know, some people live for years and years on dialysis but guess what others don’t. One thing I am not tolerating is Pollyanna like remarks. I will go into more of all this in another post. Bottom line, my life has changed drastically and I have been told what my future holds.

Am I sad? Yes. Am I frightened? I am terrified. But I am going to fight like I have my whole life. Right now the goal is to preserve what kidney function I have. I am drinking sodium citrate twice a day to turn down the acid in my blood. I am taking more insulin. Because my kidneys aren’t functioning well, I am extremely anemic (which is why I am so friggin tired). I am on high doses of iron and vitamin D. I am trying as best as I can to be more physical. And I have had to change my diet drastically. I am going to see a renal dietician next week.

This is the most ironic part of all this: all these years I have been dieting on whole grains and tons of chicken and vegetables, I have been hurting my kidneys. I have to right now avoid potassium at all costs. Who knew my stables of broccoli, Brussel sprouts, darks greens and chicken were the worse things I could be consuming. In the effort to meet everyone else’s standard of looking appropriate, I was poisoning myself.  I will be going into this more as I learn about it. But am I angry about this…well yes I am.

In truth, I am very angry about the whole thing. I went to a renal class already as the nephrologist suggested it would be good for me to know what I am facing. She knows I already have done a lot of research on things but she wants me to get the truth, not the Internet truth. I am actually looking forward to seeing the dietician because for once, it won’t be about being fat. This is one thing I am going to write about because the discrimination of people of size is outrageous in the kidney world.

My life is altered completely. I am not taking crap from anyone. I am going to do what I want without guilt. I don’t think my husband fully understands, but we have talked about it and he is compassionate. That’s all I want right now as I lick my wounds and get my fierce up. I am glad I am retired as I can do as I can when I want. My future will be tethered to a machine, but for now, I am not. And I am going to treasure this time.

 

 

 

 

Retirement blues

I have not posted anything in a long while as times have been a bit grey around here. But a lot has happened in the past three months, not all good. Having PTSD and being a highly sensitive person, I am affected in a manner that most people cannot comprehend. They click their tongues and come up with platitudes. They do not understand that words have little effect on me. By the time I become upset, it is way too late for words. And try as I might to self-sooth, there comes a breaking point where my body reacts, even if my “brain” says I am cool.

Winter is my least favorite time of year. This winter has dragged on. Here it is April 8th and it is snowing out right now. We have had it every day for the last week. The sky is a dull grey that looms over the area day in and day out. The cold is damp and seeps in everywhere to permeate my bones. I have been wearing four layers of clothes for the last three months. I feel like Randy in The Christmas Story as I whine “I can’t put my arms down.”

I retired from my job the first week in January. People think I am lucky because I do not have to work. Truth told: I left because of my health. I am a pretty sick. The stress was no longer worth it. Leaving has helped as my blood pressure has gone back to a normal range. The first month was a bit disorienting. I felt I had no purpose. I obsessively set out to clean out my house. I emptied out closets, boxes and drawers of clothes no longer worn. I sent off a boxful to a friend who is similar in size. I made multiple trips to the donation center.

Then in February, my husband got into a car accident and wrecked my brand new 2018 SUV. We bought it in August. He was fine and it was not a big accident. He was not paying attention and rear-ended someone. I was stranded now at home. Before I had his car to use as he took the new truck to work. It took over 6 weeks to get the truck back. I was pissed at him big time, but I tried not to get in his face. As the days wore on, it got harder and harder not to be resentful. I had to go to the dealership and fight for several misdeeds and we finally got the truck back. I had my freedom again. I do not know how people cannot drive. I understand now how the elderly feel when they have to surrender their driver licenses.

I got in my head that I needed to get a job. I obsessed over this nightly from 2 am to 4 am. We had some work done on the house and spent money I had not planned on spending. Word of advice for those who are planning on retiring: you will worry about money. There is a sense of loss knowing that you are not generating an income. I have worked since I was 11. We had been planning on me leaving for over six months. But the reality of it does not hit until you are no longer getting that weekly paycheck. I felt useless.

I spent hours combing over Indeed. I have applied for over 70 jobs. I did get hired for a very small job that pays me a ridiculous small amount. I am not sure how long it will last. It did give me a sense of doing something and being connected. I was perseverating and creating a problem that was not necessary. I do that a lot. I do not like to feel unsafe and not having an income will do that. However, I left on my terms and with planning. This is a lot better than being fired unexpectantly which is something “old” people experience a lot. My ex-company was clearing out people over fifty like they were the plague. Most of the senior clinicians and administration are all gone now with five more retiring after I left. I started something.

I am hopeful things will turn around soon. I did leave because my health has been deteriorating steadily. I am not going to go into it in this post. I am going to a specialist next Wednesday to see what can be done. It took three months to get in to her. That was also frustrating. I am ready for a battle because I will not tolerate fat shamming by anyone. It is time my doctors pay attention as to what is going on. None of it is due to being fat. Much of it has to do with being on the wrong medications.

I am also hopeful that the snow will stop and my favorite time of year will commence. I love Spring and early summer. I will be outside every moment I can. I will work on the garden, which right now is covered in snow with huge branches and sticks that blew down from the last wind storm we had. It is a mess out there.

I also shifted my point of view of worrying about work. I have the time now to do some of the things I never had the time or energy to do. I got my ceramics out to paint. I am going to look into taking some music lessons or join a choir. I want to take some classes and my husband and I went up to the rec center to look at what they had available. I am going to learn to play golf which is loves so we can do that together. And I have read a ton of books. Sitting curled up in my chair with two dogs in my lap and my Kindle has been one of the best things. I used to feel guilty doing it because there was always some work to do.

As they have for the last three years, the doves showed up and refurbished their nest. This is the ultimate sign of spring for me, even if the weather is not cooperating. I feel so bad for them as it has been bitter cold and we have intense winds several times. I know she has at least one chick now because of the way she is sitting. I can sit out there with them and they walk around me or fly up to the nest with no worries. Even the dogs do not bother them. The yard is filled with bunnies and chipmunks and very fat squirrels. Some would say they are vermin. I love them and feed them daily with bird seed. And at sunset, when I sit out all bundle up like a mummy, they entertain me better than TV. We all want spring.

I feel like I have climbed over a mountain. I have more mountains a head, some of them could be life challenging. I wish I was like my husband who goes with the flow. I am just the opposite. Part of it is because of the PTSD and not feeling safe and in control. I have worked all my life to get to retirement. It is what we all do. I don’t want to waste this time worrying over things I cannot change. But those things I can change, watch out!

( Note:  I just took a break to let the dogs out and noticed the doves are gone this morning. Something happened because they would not leave with a chick in the nest and they have not been off it for two weeks. GONE… you have no idea how upset this makes me.)

 

 

 

 

 

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.