A journal of healing

Posts tagged ‘Psoriatic Arthritis’

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.

Advertisements

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.

 

 

 

 

Fighting auto-immune disease

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.

Fearless….again

  I am reblogging one of my own posts that someone recently sent back to me to remind me of my own words. I am struggling with so much lately. My health is not great as it seems that the PsA has done a lot of damage to my kidneys and guts. This past three years and especially this winter, was particularly bad for me. But, as the doctor said on  this past Friday, well at least it did not decline anymore according to my recent labs. As I sat in the garden this morning, I searched for words to console me. Then, in an attempt to clean up my email, I came across this:

Fearless

Posted on June 4, 2013

Once you step free from the limiting, linear straight jacket that narrowed the understanding of the vastness of your consciousness, everything seems to fall into place, (because it was always exactly as it was intended to be anyway, you just didn’t see it that way). There will be nothing to worry about, and no sadness to embrace; at the very least, you will be much less inclined to engage in that sort of thinking. – Rising Hawk

These words written by my friend are the key to living longer and happier. It is not the first time I have read or heard similar messages, but sometimes you can look at something and feel nothing. Other times it pulls you by the collar and slaps you soundly. This is how this hit me.

To release control, to allow your life to happen…such basic concepts and yet, not easily done for people who are frightened. I paused as I wrote the word frightened because it is word that evokes pity or distain, but it is the word I choose but not my intent. I have to advocate for those who are in or come from surroundings that to the outsider seem safe or harmless. These souls present to the world a false bravado while under their skins pulses the sense of fear. It is the walk of many, including me.

I am one who struggles daily with fear of what might be construed as silly to some. But that is what this is all about. Fear is as individual as the person containing it. I fight mightily to allow the control of my life to flow without my choking grip on it. It was making me sick and my body was tired from holding on so tight. For those who may seek some comfort in my writing, it is possibly to let go even if it is an inch at a time. Each forward release allows for more room to breathe and the body to function as it should.

How does one get to be enclosed in a box? It comes from so many sources. It is life. For some people, much like me, it comes from a dysfunctional and abusive life. I was sitting in a car this weekend listening to a school psychologist talking to another friend about children she has helped whose parents were abusive alcoholics. I sat and listened while my friend was so amazed and horrified with the stories as if they were just that, fiction. I wanted to chime in and share my personal story, but instead sat back and just listened. It was difficult and I actually felt some anger as the two of them talked about the children as statistical information.  I also felt some relief to know that this is not WHAT I am as this person in the car, but only my story. I had a sense of relief if nothing else.

I see and hear every day the barrage of negativity thrust upon us daily to keep us reigned in. We see and hear all the things we need to buy or obtain in order to be something that sadly we are lacking. It takes a strong will to turn away and not succumb to the temptation to secure a better car, house, body, clothes, and on and on. We force this standardization on our children to make them fit in and behave in an approved manner. Why is that we allow this fear and perpetuate this environment of control? This is a question that has been around forever. See the Allegory of the Cave by Socrates. We have survived as pack animals.

“No sadness to embrace…” I held those words in my thoughts all night. Embrace; what a strange concept to think we enjoy sadness. But we do. We love drama. We pay to see actors portraying life struggles because we can empathize and feel  our own sadness as a bonding emotion. Pathos. It what drama is all about. I have friends whose whole life is based on a miniseries of dramas. It is food for their lives. I am not exempt from this either and that is why those words struck me. I work in an environment where the drama level is fed daily. Most is simple confusion of an unorganized work flow. But they have been this way forever and I realize it is a culture that is embraced. They live for the confusion because it is an opportunity to emote and wring hands. They bond with each other in their complaining and strife. I see the same culture in my in-laws. They are passionate about the anguish produced from the simplest situation. It produces a slew of emails and phone calls until the event is secured or past. Then it stirs up the discussion and critic of the players involved, which is often another go around of scorn.

But the sadness I am referring to is the self-inflicted kind which I am truly guilty of. I have seen pictures of me where the sadness is evident in my eyes. People have commented on it as I do not hide my feelings well. NO, in truth, they cloak me like a neon sign. I have become aware of the origin of my sadness and I know in my head, that I cannot change what has happened. This is where I have come to the fork in the road so to speak. I can choose to “not engage in that sort of thinking…”

Can it be that simple? This is one of the life lessons that does not come with great directions on how to do something. I read, listen, and participate in learning as much as any seeker does. Is this not what we all really want, to not be sad and to be free from control? I figured out that no, actually not everyone does want that and will take you with them down the hole if you allow. And then there are some who see a secure and happy person and will go to great lengths to sap the life out of them. They are like a mosquito sucking the life blood of other’s because it is easier than obtaining it on their own. It takes great strength to disallow these creatures their feast. Our own minds can be a foe and a little fear can spiral out to become a monster of our own making. Fear is a companion that has been with me a long time. I am not going to sever the relationship overnight, but to travel on I must begin. This will be a long climb but one I must make……. alone.

Retirement is a carrot on a string

I know I am not the first one to turn 63 as I did two weeks ago. It should not be a big deal. But somehow, and I am not sure if it is the age or just the energy around these days, but it does seem harder and harder to get through the day. And it is not just me.

There is a HR manager who actually hired me. To look at her, you would think she was maybe early 60’s. She is small in stature and her still brown hair has never been dyed. She had eight children and 19 grandchildren. She has also been a ball of energy since I have known her.

But when I came back from vacation, she sat down at my desk with a heavy sigh. “You were missed,” she said. Heck, I was only gone three days. But we had a training class going through that was from hell. I thought there had been more issues, and there were. But that was not what she wanted to chat about.

She said, “I think it is time for me to retire.” I almost fell out of my chair. In truth, I did not expect it. She has been with the agency for over thirty-five years. We had just celebrated her birthday which marked 78 years. She has earned by all rights her retirement. But she works part time and has always said the job kept her going. I figured she would stay at least two more years.

She said she just did not have the patience to deal with stupidity any more. It was something I totally grasped and embraced. She was tired of seeing the repetitive efforts of our agency dealing with the same issues over and over with no better outcome. She said in general, she was tired of everything being a fight or lengthy discussion. She was also tired of the outcomes or consequences having no impact. She was tired of staff getting away with what they have been getting away with lately, like piss-poor documentation with no repercussions. I got exactly what she was saying. Management has an “everyone is a winner” attitude and coddles the clinical staff. But it is costing us dearly.

Earlier in the month, my dear friend and I had a similar conversation. She is one person who always looks to the good in people and is the very non-judgmental. But as we sat out in the garden chatting, she revealed her frustration with just getting through it all. She said she just does not have the patience for dealing with, (and I paraphrase), people.

I am right there with them both. I struggle with my impatience with the attitudes of people who seem to have no comprehension of way of things. Maybe it is that the way has changed and no one told me. I have no patience for those who are coming up who think they know everything and have no problem saying so. I listen to them at meetings coming up with things that have already been tried and failed. But they feel they are amazing and Einstein. They are rude and talk over people.  I really am turned off to their arrogance which they seem to drip with. I too struggle with the agency doing the same thing over and over hoping for a different outcome. And I am just tired.

They did a big injustice moving the retirement age up. I pity the next groups as I see them continuing to move the age of retirement up. It won’t matter as there won’t be any social security money anyways. There are a going to be a lot of folks in the next generations who will have a horrible time in their old age. They do not have clue about saving. Heck, they are still living at home until they are thirty.

What do I want truthfully? I would like to have an on-line flexible teaching job. I would like to have good health benefits that will continue with the treatment I am on. I already know that I will go to the recreation center which has wonderful programs for people with arthritis but the classes are for seniors and are in the morning. I know I am going to join the senior chorus that currently meets at 2pm. I have other plans for things but…. No can do now.

I need medical coverage. When I retire and go on Medicare, the drugs I am on that keep me going will not be covered. And Medicare is certainly not free. It costs my husband almost $300. 00 a month for it and his supplemental insurance. They take it right out of his social security monthly payment. NO choice. And the once a year, he hits the donut hole. The donut hole is now up to $4900.00 that you have to pay out of your own pocket annually. This is a whole other blog. But this is another reason why senior citizens are nasty and angry. We worked all our loves to get screwed by Medicare. My step-daughter who works on average 20 hours a week is on government insurance and she gets great coverage and it is FREE. That train ride will end soon.

Turning 63 and being close to retirement is like being on a diet in a bakery. Everything looks so wonderful and yet, you can’t have any. Am I turning into a curmudgeon? Absolutely.  But I am not alone. That gives me solace but it does not resolve my getting through it for at least the next two years. Some days I feel like I am being held hostage and have no choice about the direction of my life. I have to work and I have to work with the people I work with. And that gives me an attitude and I know it.

 

 

 

Shave and a hair cut…..it is Spring!

  These are the loves of my life. The pups are Papillion mix and the legs are my husband’s. He went into the cheese drawer…enough said if you have dogs. I let their fur grow out all winter to keep them warm. The day this picture was taken, it was 85 degrees. It was an unusually warm spring day, and we were not prepared.

 This is Browny. He is a “special” dog as in the fact he is was pretty traumatized. I have no idea of the truth of their history other than they were very mistreated. They think they were around four and five when we got them and we have had them for four years.

  He is the sweetest baby ever. But he has manic episodes where he barks like crazy at anyone near our home. If they come into the home, its even worse. He has bitten someone. He will defend his partner, Cookie, if anyone tries to threaten her. We have no idea of the true relationship of the pair other than they are devoted.

   Miss Cookie seems sweet at first, but she is a bruiser. She likes to be dirty all the time. But she adores me and her Dadder, especially me. She does not like to be brushed so by the end of winter, she is pretty messy.

  She loves to roll in the snow, but hates baths. She will go out and roll in the grass or mulch and often comes in the house covered in “stuff.” So it was time for their summer haircuts. I finally found a groomer who has a van and will come to the house. Groomer on the Go. Eric was wonderful with them and I highly recommend him.

 Cookie was mad. She did not want her picture taken at all.

  But she looks amazing!

 The B Boy looks completely different. His fur was extremely long with a long tail. Eric cut his tail, which was necessary. But the view is completely different.

  He really fits the name Monkey Boy now.

Spring is everywhere, finally. We spent the day yesterday digging out the veggie garden out and turning the soil. We then planted some lettuce. I was so thrilled to be able to get down and actually work in the garden. It was at first scary getting down, it was even more scary trying to get up after being down on the ground for a couple of hours. But I did it. I am paying for it today, but that’s ok.

  Here is half of the garden with the lettuce protected from the bunnies. I put in some lettuce in pots without sticks and the chomped them down overnight. Sorry bunnies…. the sticks are back.

  Slowly the garden is getting in shape. I think of it as a canvas that Mother Nature and I work on together. Next week I will post pictures of the flowers and lilacs. It is beautiful.