A journal of healing

Archive for the ‘death’ Category

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.

 

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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.

 

 

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.

 

 

What would Mom think?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

A Pissy Situation part one

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.

 

 

 

 

Insurance Assurance

When you get to a certain age, you have to think insurance in a whole new light. Insurance can mean your health insurance, it can mean life insurance but mostly it means being assured that the next part of your life being what it should. My biggest fear is to die before I can reap the bounty of my years of work.

I started when I was 11 years old working summers, every weekend and even some school nights taking care of other people’s children. I was in high demand and was told by my parents that I will work. By the time I was 15, I worked in a department store on a work permit. I was still in school but weekends and summers were not mine. Then like people of my generation, you worked, went to college or went into the military. I went to college and worked. I continued that pattern for most of my adult life.

Now I am reaching a time that I will not have to work. I planned, scrimped and saved, and bought insurance in the form of an annuity and pensions. It feels like climbing a mountain and getting to the top and saying “Now what?”

If you do not know, the slope is very slippery. When you turn 65, you have to apply for Medicare. You don’t have to take it if you have some other form of insurance, but you paid for it all your working years. Why not take it?  My biggest advice is to find an insurance broker and work with them. It is the most confusing mess I have ever seen. One part D covers this but not that. You need a supplemental if you have these kinds of problems. And eye care and dental coverage varies greatly. Working with an independent broker is great because they will take all your information and calculate what is best for you for free. Then once you decide based on their information, they will sign you up. Our broker will call us  to come in and redo this so annually we will have the best coverage for the price. For my husband, she eliminated a premium and lowered co pays but found better drug coverage.

My next step is to find an honest financial planner. This has been a quest for me for four years. It is not like we have a ton of money, but what I have I want safe. I had originally invested some money in the stock market. We found this person who at first seemed great. He charged a flat fee and was going to help us plan our retirement. He took the money, invested it and it lost a ton. I was devastated. He offered no help, did not come true to our planning process and we basically were screwed. I waited it out until the money we lost came back and we were at our original amount and pulled it out. Of course now, the market is through the roof. But I could not take the fear of losing everything.

Financial planning is important because too much money and you are screwed, not enough and it’s even worse. Our biggest issues is we both have high drug costs. Currently we cannot subscribe to any of the help out there because we make too much. If we were only $1.00 over, we would still be out of luck. Epic is a drug plan for people with high drugs costs but only for New York State. So we have to wait until I have a lower income to be able to get that help. We have to plan what pensions and other income we take in so we can get this support. Seems counter intuitive but that’s the game.

Here is another guessing game: when to retire. It is all a gamble. Say you wait until you are 66 to retire to get your full benefit. But you die when you are 76. So you only collect your Social Security for ten years and all of those dollars go back to the state. But if you look at the fact that if you take the lesser monthly benefit at an early age, you will get it for a longer period of time and it evens out. Losing $200.00 a month may seem drastic right now, and that is what they want you to think. But if you wait and die sooner, you lose that money.

Here is something else people do not realize. This is real life experience. My mother-in-law was placed in a nursing home. She was private pay. You would think she would have had the best of everything. That was not at all true. She was side by side with all the people who were on Medicaid. They got exactly the same care or lack of care that she got. Difference was that the State was paying their way and we were paying for my MIL. All that money they saved went to the nursing home. This really pisses me off because my step daughter also plays this game. She works just enough and no more so she can stay on Medicaid. She has better health coverage than we do. What a scam. But that is a whole other topic.

When we saw an Estate planner, he told us that nursing homes were the biggest rip off. He told us that all funds at a certain point in your life should be protected by trusts and other forms of protection. He said that money can be put aside and protected if you wanted to pass it on and not give it to a nursing home. An Estate planner is essential to protect any assets you may have from being taken by the government. It is also necessary so that what you want in your death is carried on. It gives great peace of mind to have that all in place.

I know that in a year and a half I will stop working full time. There is no doubt about it. I will probably find a part time at home job just to keep busy. It will be a test of time to see if we planned well enough to enjoy what years we have without all the bull and still have a comfortable life. I know too many people who thought they could make it on what they had and had a rude awakening. Trying to find a job at 65 is not easy at all. I hope this information is helpful.

Making it count

shipwreck

Every year we live is a good year and I am grateful for it. My parents both had short lives, especially my mother who passed at 57.  I have lived longer than she did. I often think of how scared she must have been at the end when she knew there was no future. She was diagnosed with end stage lung cancer and there was nothing they could do for her. She died six months after being diagnosed.

My father had Factor V Leiden which he inherited from his mother’s side of the family. She too had issues with phlebitis but was never diagnosed. I remember by the time my father was 45, having to have his legs wrapped in warm washcloths to help with what was probably a DVT ( blood clot). I remember as a teen borrowing his compression socks to wear as knee socks. I had no understanding of what he was going through. When he was 53 he had to have his leg amputated. I thought he was so old. He spent his remaining years in and out of the hospitals with bypass surgeries and other complications and passed with a heart failure at 71. In reflection, I am amazed at how he managed to get through it all. He made my life hell with his demands after my mother passed, which made it hard to have compassion for him at the time.

Both my grandmothers lived healthy way into their 90’s. My Nana never worked a day in her life. She was a gracious woman from a bygone era. Her husband was a very young man when he died. He never heard the train that he drove in front of. My uncle, who was three, also perished in the accident. It was never spoken of other than that bit of information. My Gram was well taken care of by my aunt and she too had lost two husbands. The first one, my mother’s father, was so changed from fighting in WWII that he returned to the states a broken man. He died in a sanitarium several years later after leaving my Gram when my mother was 15. Again, we never spoke of this. I found letters and clippings in my mother’s trunk of stuff after she passed.

My father’s remaining sister lived very well. My uncle, her husband, however died of ALS. I cannot imagine how terrible that had to have been. Uncle Bob was a vibrant man. My Aunt Louise also did not work in the sense of a  9-5 job. However, when she was in her fifties, she became the Mayor of her town on Long Island. She remarried and traveled with her second husband until she was stricken with bone cancer.

My other aunt lived also into her nineties. She died of a broken heart. Her beloved husband literally fell over in their living room of their vacation condo after driving from Michigan to Texas. He was 90. They were devoted to each other and my aunt never recovered from his death. She just gave up living. She could have done anything as they were multimillionaires. But for her, life without my Uncle Larry was not worth living.

Why the morbid litany of my family history? Because the last year has been the unhealthiest one I have ever had. Truth be told, I am not sure of what the outcome is going to be for me. None of us really do. I have been very scared. I finally went to my PCP, who blew off my symptoms as just being fat, even though lab worked showed some major changes. I went to my rheumatologist who thought completely otherwise. Last week I went to see a Cardiologist. They did an EKG but then refused to give me much of an explanation of what they saw. I am scheduled for a series of tests next week to see what is going on with me.

I had to fight for anyone to listen to me. I know something is not right. It is not that I am wishing for there to be something wrong. Oh no, just the opposite. But I know how I feel and it is not right. I do not have a lot of faith in the cardiologist who actually never saw me until the end of the visit. He had another very young impatient MD do the exam. She said something about my T waves being inverted, when I questioned her and that was it. The head cardiologist never looked at anything because he recommended I take a statin. My cholesterol is below 100 consistently.

I have been taken off of everything. I cannot even take Advil, which really was messing me up, but dampening the pain. OTC drugs can be very dangerous. I had taken 1800mg of Advil for months back thirteen years ago before they put me on a biologic and I was diagnosed with PsA. I was taking under 1000 for the last couple of months just to be able to move and sleep. It was making me very sick.

I will admit that I have had thoughts this past month that I was going to croak. I have never felt so consistently awful. This made me think of what my relatives must have gone through when they knew they were facing horrible futures racked with disease without hope. I am afraid of dying. No lie there. But more important, I do not feel I am done with whatever I am supposed to do with my life. There is something so profoundly sad as thinking you have wasted your life. Not that I think my life is a total waste….but that I want to do something more with whatever time I have left.

I just do not know what that is or how to accomplish it. I hope I will figure it out.

I wish everyone a blessed New Year.