A journal of healing

Posts tagged ‘PTSD’

A Pissy Situation: Part two A Big Fat shame

    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.

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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.

 

 

 

 

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.)

 

 

 

 

 

Hyperarousal and Hyperviligance

I have lived with insomnia for many years. I remember as a young teen sitting in my parent’s living room watching the slow dying glow of a log burning in the fire place. It was the middle of the night. I was told as a very young child that I used to sleep walk and I actually fell down the stairs. I can remember when I was 30 the sleep walking started up again and I also had other sleep issues. The biggest issue I have now is related to PTSD. This is when you wake up in the middle of the night and cannot go back to sleep for hours. But there is more to this than a bit of anxiety. It is hyperarousal.

Hyperarousal can be defined as the state of being aroused, on guard, being overly alert and perceptive. The person who is suffering from hyperarousal is actually in the middle of the ‘fight-or-flight’ reflex that occurs when the brain sends out signals of impending danger or feels threatened. It puts the body on guard – ready to run away or stand and fight. Either way the heart beats faster, the eyes dilate, breathing is shallower and you become very alert. https://www.sixstepstosleep.com/hyperarousal-insomnia-sleep-anxiety/

I suffer from hyperarousal during the day as well. But in the middle of the night, this beast rears its ugly head and I am struggling for hours. If I do fall back asleep, I usually end up with a nightmare of some sort. All this is chemically regulated in the body. I do not know what exactly the trigger is all the time for me, but it happens when I am in a state of stress. I can perseverate on the smallest detail and by the end of an episode; I will have worried myself into a real frenzy.

Two weeks ago I actually got up and took my blood pressure and the reading was extremely high. But it was high all week from the stress of leaving my job. The physical condition I was in from the pressure of work and the all BS going on played havoc with me. But even with being away from the situation, I am able to find other things to fret about.

Hyperarousal also causes me to erupt. I can over react to the smallest things such as simply dropping something. I get frustrated very easily and have an over the top reaction. For me, it is compounded with the high level of pain I am in from my psoriatic arthritis. Unfortunately, it is a nasty loop. I get mad from being in pain and limited in my mobility and then I get a flare from being upset. They feed each other and around I go.

Compounding the situation is the sister reaction to hyperarousal which is hypervigilance. That is when you are always on alert. This is when you constantly are scanning for threats. When I was first diagnosed with PTSD, the therapist said I was like a trapped animal. I never turned my back to him. I constantly watched every move he made, especially with his hands. I think I am better but when I get threatened or perceive I am being threatened, I go back to being hypervigilant. I realize now that the past couple of years being in the toxic work environment I was in really set me back. A result of being hypervigilant is being exhausted. So I fall asleep very quickly but wake up in the middle of the night. On average, I sleep in two to three hour blocks. A good night is when I can sleep with a four hour block.

I write this not as a venue to complain but to share for someone who is going through similar things. There is comfort in knowing that you are not alone. I am planning on talking with my doctor about this if my sleep does not get any better. They recommended last year I seek retirement. It has been a long haul getting away from work and the nasty people I worked with. I have had some things going on in my home which has been concerning so I have not been able to totally calm down. But I am physically more active at home and that helps. I also need to get back to a strong practice of meditation again. That really helps. I already feel better and I know I am healing. But it is a slow path.

https://www.medicalnewstoday.com/articles/319289.php?sr

 

I did it!

I did it. I left my job. I “retired.” It has been a tumultuous month getting prepared for the last day. It came and went with a whimper. My body reacted far more than my mind. In my head, I kept feeling like I was going on vacation. Not even on the last day when I packed the light that has been on my desk for 6.5 years  did I feel like it was a permanent situation. Handing in my badge was emotional however. That has been my identity for so long. “Employee” “Director.” Now what am I?

I am relieved. It is hard to explain how much physically different my body feels. I have been living in terror for so long and the last month was even more so, if that is possible. When you have PTSD, your body takes over and reacts without your thoughts. I was a knot of tension which got worse until the last day. My stomach ached, my blood pressure was way up and my chest was tight all the time. My normal aches and pains were heightened. I did not sleep. I was a mess.

But my Spirit guides showed me that the path to leave was the right choice by showing me a glimpse of the future. I left turmoil and a toxic environment that was only going to get worse.

One by one, my employees came to me to tell me their plans for the future. One has a sick mother and will probably be taking FLMA and the new extended paid FLMA is the spring. She already asked for two weeks in February to make plans. Another one wants to go back to her family in Africa where she has a sick sister. She too is planning on using FLMA to scope things out in the early summer and then leave later this year.

They never hired the new clinical education manager. Now, they are so desperate, they may promote the girl I hired to be the Educator. I hope they do that as at least she has an idea of what is going on. When I resigned, the VP redid her job, and took away most of the responsibilities that made the job challenging and interesting. If they keep her at the position, she will walk. She wants to grow in her career, not go backwards. The Lead Preceptor is still on limited restrictions and only working five hours a day when she can. She detests the VP and will go back to field if he messes with her.

But the final conflict was with the part time paraprofessional trainer I hired last year. She was a pain in the ass from day one. She wanted more hours. She did as she wanted. She did not follow regulations when it came to training. It was a tough job to fill and so many times I looked the other way on certain things. But I knew she was a liar because she got caught in lies so many times. What made her lies so hard to comprehend was that her other job is a Pastor of a Church, unless that is a lie too. The last straw was her timesheet the week after Christmas. She marked herself in an hour and half sooner than when I know she was there. I had four people looking for her on this day who all said she showed up at 1:30. She marked she was in at noon. I went back and pulled her timesheets for six months and matched them up to her badge swipes and there were huge discrepancies. We have to swipe to get into the buildings. I never trusted her time, but I did not think she was padding her timesheet as much as she was. And it is hard to prove because I was not in the same building as she was so I never knew for sure when she came in. But this was fraud and I had witnesses. I had to fire her.  The stress of this was terrible. But somehow she got wind of it or knew her performance was terrible and resigned on this past Wednesday. I was so relieved because she is very unstable and firing her might have been very dramatic and possibly violent.

There was so much else going on during all this. I left a mess that was only going to get worse in time. The new regulations coming out governing the way home care agencies do business are ridiculous. The amount of documentation that the clinicians are going to have to do is extraordinary. It will be too much for some and they will go back to the hospitals, where there is much less documentation. The insurance companies are building in requirements that are so restrictive in order to deny payments when they are not met. Much of the work that was done in the last two year at the agency has come unraveled. The big Lean projects designed to correct money issues are collapsing due to lack of oversight. Since June, the agency has lost even more money that they did the previous two years and will be at an all-time new low as far as meeting the budget. They will lose over 5 million this year. It will mean even more layoffs with a support staff that is extremely limited. They already canned one Administrator. The “Mothership” will be replacing higher positions with their personnel and absorbing more of the support roles. That has already started. They will never shut them down, but they will run the agency.

But through all this, I came to realize that I was not cut out for the tension and back stabbing anymore. I also do not like the “new” workforce. I had to train this young chicky who is the golden child of the VP I worked for. She is the typical young spoiled child in her late twenties. One day when I was training her on a training system we use, she was slumped across my desk with her head in her hand yawing in my face. This lack of respect display was only heightened by her continually picking up her phone to check something and text. How much do you think I really showed her? Good luck! On the last day, she was panicking because the VP asked her to pull a report and she had no clue as what to do. The three of us had to meet and I did explain it again to her in front of the VP.  I will not miss that crap at all.

I will not miss the hurry up and do something only to have it not used or forgotten. I think of all the stupid busy work that I was requested to do by the rotten VP only to have him move on to something else. I think of all the finger pointing and the excuses and blame. I will not miss that. Did I just get old and was this crap always there?

The firing of the part time instructor caused a huge issue. She was also the train the trainer, and instructor for the agency’s CPR program. By regulation, we have to have some of our staff CPR trained. The same chicky who was so bored during her training with me was to be trained as a new instructor and to take over the oversight of the program when I left. She missed her training (three times) and so was not certified. I was leaving them without an instructor in CPR. This caused me great worry. She could give a crap.

I finally figured it out. Her generation was raised, and especially her because she was an only child of elderly parents, that she never had to resolve anything in her life. Someone else always has fixed it or she just didn’t care. I have seen this behavior in so many 20 and 30 year olds. I was raised to take responsibility seriously. I took it to an extreme where it was physically harming me.

This lack of concern is apparent in the quality of documentation performed by the clinicians. I see it in young managers who cannot deal with conflict and go running immediately to their superior. I see the degradation of leadership where the “what-ever” attitude is beginning to permeate. This is not an arena I am comfortable in. I want to work with people who give a shit and take it to heart when they are in charge. I cannot abide the cocksure attitude of children who think they know everything until they are put to the test and then point fingers at others in their failure. I see it our training rooms where people are looking at cell phones instead of absorbing the lessons that will make them successful. What is even scarier is the increase in errors in medical practice. Very scary. My favorite horror story is where some packed a sacral wound only to discover it was the person’s anus they packed.

I know too much. I know what has been buried. I sat too long on boards that over saw the discrepancies and issues that were harming patients as well as the agency. I am no longer able to tolerate the lack of concern and I know I was not the only one. I was the last of the senior staff that was with me from the day I got hired.  We called ourselves the Brain Trust and we were powerful and passionate about our jobs.  They all have left or retired.

Smugly, it pleases me that it will take two new directors and two new managers to do my “job”.

The only thing I am in charge of now is me.  I think I am in a good place finally.

 

 

 

What is PsA and P?

Psoriatic Arthritis: PsA is an insidious disease. It is very misunderstood even by the medical community. It is hard to find a specialist who can really guide you. There is no cure and it is progressive. PsA has a partner, Psoriasis or P. They are not mutually exclusive. Each has their own issues and pathology. It is rare to have PsA without P but you can have P without PsA. Both are considered auto-immune diseases and often have other co-morbidities. All this is evidence based information.

And much like other diseases, they are triggered by stress and trauma. If you understand the ACE Study, it all makes sense why diseases like this are becoming more prevalent. It seems lately more and more people are being diagnosed with some form of chronic auto-immune disease. Is it because so many of the baby-boomers are of an age where disease is a common part of life? Or is it because there are more studies done and better research as to causes of crippling diseases in senior citizens.  I think it is both.

I have been involved in two research projects. One was for P and the other for PsA. The one for P was fascinating. They were looking for the correlation of outbreaks on the skin and stress. We were divided into two groups. One was given only exercise and nutritional information and asked to make lifestyle changes. Fortunately, I was chosen to go into the other group. We were going to be trained on Mindfulness Based Stress Reduction techniques. MBSR is now a more common approach for people dealing with issues such as pain. Back then, it was pretty new and out there. Jon Kabat-Zinn developed the program for people with cancer and pain.

The program was several months long. We met once a week. We talked about our week, our disease, anything we wanted. Then we meditated. Sometimes we did yoga. This was a several years ago. The instructor was the Chief MD in charge of the Oncology Department at the Medical Center. He was very progressive for the times. Now, there is a requirement that all med students take MBSR. Everywhere you look they are courses on Mindfulness and stress reduction of some kind. This is progress. But I live and work for a very large medical center that is also a teaching hospital, a university and a research institute.

But with all that, they still do not know much about PsA and P. We do not have a lot of doctors who are rheumatologist in the area. I am fortunate to have a good one. But even he will admit it is trial and error. And we have had some egregious errors. The course of action is to put the patient on a drug regiment which often includes steroids and progressively stronger biologics. Even the manufactures say there is high risk associated with their drugs. It is also known that they only work for so long and the body becomes immune to the drug. Then you have to start over.

In North America and Europe, between 18 and 42 percent of people with psoriasis, an inflammatory skin disease, also have psoriatic arthritis. In the United States, psoriasis affects about 2.2 percent of the population (7.5 million people), making it the most prevalent autoimmune disease in the US. (http://blog.arthritis.org/psoriatic-arthritis/psoriatic-arthritis-psoriasis/)

Nothing is more terrifying than knowing there is nothing you can really do to stop the progression of a disease that is ravaging your body. And there is nothing more frustrating as seeing the deterioration of your body and your ability to be independent. The medications all have side effects and some of them include cancer.

I have always had this disease. It got much worse when I went through my divorce. I believe the stress triggered the eruption on my skin. Doctors, including a dermatologist, could not diagnose why I had this rash everywhere because it did not look like “normal” psoriasis. It was though. I had always had issues with my joints, but was told it was because I was fat. But when my hands curled into claws and I could not hold on to anything, I finally was sent for testing.

PsA is possibly genetic. I had psoriasis as a baby but they called it eczema back then. You cannot catch PsA and P is not spreadable. There is no cure but you can put it into remission. I have been blessed to do that several times including right now. I have only a few skin lesions.

But from all the drug switching and the use of such powerful drugs, I have diabetes. My pancreas is whooped. My insulin levels are normal in the afternoon, but in the middle of the night they drastically peak. I am on medication now for it that adds a lot of weight….. Makes no sense because as you gain weight, you insulin resistance goes higher. The shot I am for the PsA also puts on weight and also increases your glucose levels significantly. It also causes high blood pressure, which is also not good.

But the main comorbid with PsA is actually coronary issues and kidney issues. The inflammation that causes the P and PsA also attacks the heart, arteries and other organs, especially the kidneys.  So far, I do not have coronary issues. However, my kidneys are in imminent danger of failing. Diabetes also impacts kidneys and so does high blood pressure. It is a circle of what is worse. Much like most auto-immune diseases, you do not die of the disease, but of the comorbidities.

I wrote this blog this morning because of a couple of reasons. One, people need to fight for better testing and more awareness of the PsA and P. The symptoms can vary as much as the way the rash presents itself. Two, we need better treatment that does not cause more issues than the disease. Three, we need more research as to see if there may ever be a cure for PsA and P and further studies related to trauma like the ACE study.

Living the Ace Study

This past week was terrible. I did not get through it unscathed. I am wounded and in a bad way. Let me explain something about triggers and how simple things can dig so deep that it can immobilize someone. I again point to the ACE Study http://www.acestudy.org/index.html  about Childhood Trauma and the lasting effects of living in and witnessing trauma.

The effects of trauma are pervasive and unique. What triggers me may not trigger you. And how I react and for how long will also be different. The first thing that I learned when I became a Certified Trauma Professional is to allow the feelings. Never tell anyone what they feel is wrong, or over-reactive. What a person feels is their right. Trying to modify behavior by saying they are wrong to feel that way or try to change them can make things a whole lot worse. It is the same principal as working with grief. Time and reaction is unique.

Reaction to trauma is also a chemical and physically wired behavior. Neuropathways are developed as trauma is experienced or witnessed. When triggered, the body reacts out of protection secreting chemicals to produce energy for flight or arousal. Long time exposure will create a programed system reaction which often includes the shutdown of the body, anger and explosive behavior, and often a desire to stop participating in life. These are the three basic reactions of trauma: fight flight or freeze. A triggered person will resort to one or all of those reactions without a sense of doing it.

This prolonged constant flooding of chemicals like cortisol and other potent hormones designed for safety will affect the body and cause illness. It is proven. See Ace Study. And this reaction does not fade, but for many, it exponentially gets worse. And so in time, less creates more of reaction. For some it becomes over whelming and they cannot function. There is no actual cure for PTSD. The only hope is to learn to live with it and tame the Tiger so to speak. By exposure to more positive situations and learning to self-sooth and calm, many people learn to cope.

I learned that revisiting the trauma is not a good thing. The old method of recreating events and mollifying them does not work and is not healthy. You actually recreate a new trauma by doing that. I found that out too late for me as I spent a lot of time recreating my events in an attempt to grow past them. It did not work. It is enough to say that I spent over forty-five years in an abusive state caused by my alcoholic parents and an abusive husband. Forty-five years is a long time to be treated like shit; emotionally, physically and sexually mistreated. One does not get over that.

So back to this week: things at work are to the point that I am reacting by shutting down. It has progressively getting harder for me to be there. On Monday,  I was “in trouble” because I was being negative in a meeting. Supposedly I was grimacing and my body language was offensive. I swear this is what was reported. In the past I was written up for rolling my eyes. My boss is a terrible boss and the person who reported this is her mini-me. I understand the dynamics and I could spend a whole other post on how horrible it is at work. But let it suffice that my boss’s words to me were cruel and hurtful. She told me no one wants to work with me. In a previous accusation of misdoing, she told me no one likes me. She then said stop reacting like you’re the victim. If she only knew.

My Clinical Educator resigned after 27 years there.. I threw a reception for Margaret on Tuesday right on site. We had a fabulous relationship. She had my back, and I had hers. I would never have survived without her when I first started. Her leaving trigger all sorts of abandonment issues for me. She saw the mistreatment and the poor leadership. She left because she had enough.

One of Margaret’s favorite things is cake…. Well actually frosting. I had a special cake created for her. It was beautiful and fresh. I was sitting enjoying a small piece, minding my own business. The VP of Clinical was standing in front of me eating a large piece of cake as well. Then, totally unsolicited, he turns and says over his shoulder just as I was putting a piece of cake in my mouth, “should YOU be having that?” I was flabbergasted.

What happens to me when something triggers me is I shut down. I go into this place of protection. Unfortunately, I am unable to speak. I remained in the room until the end of the reception. I never touched the piece of cake again. When I left the building, I burst into tears and cried all the way home. (I actually cried again when I wrote this) I had my fill of painful criticism and hurtful remarks. This is continuing to affect me as I have not been able to sleep through the night. I wake up and perseverate on all the nasty comments.  This is physically causing some nasty flares and a lot of pain.

I am hyper aroused and anything sets me off like a loud noise or small issues. On Wednesday, Joe’s car had a huge malfunction with alarms and flashing lights going off when we were going somewhere and I completely flipped out. I was so upset I was hyperventilating and curled up. We got the car home as we were not too far way but I cannot explain how terrifying it was for those four minutes. I was so bad; I took the next day off. I had to lie because they would never have understood.

I know what I have to do and I am working on getting out. But it is not so easy. I am lucky there will be escape. But how many other people are out there who deal with this daily? No one knows the effect rude and nasty comments can make. We all agree a positive remark can make someone’s day. Why is so hard to see what a offensive, uncalled-for comment can do?  We need to learn to be more sensitive to people. Kids are killing themselves or becoming addicted to escape the effects of bullying which is extremely traumatic. Bullying continues in adulthood and some people are true experts at being bullies. I have met many. How many people suffer in silence only to get sicker and sicker because the effect of childhood experiences haunt them as adults?