A journal of healing

Archive for the ‘obesity’ Category

A Pissy Situation part four: You are what you eat.

     Every month for the rest of my life I will have to have labs done. This is in order to see if there are any changes in my values and if there is a decline in my kidney function. It is like spinning a roulette wheel. The anticipation before going for the labs is tough. But waiting for the results is worse. Two labs ago, I was headed for dialysis in a rapid way.

But I took control of what I could and that was what I eat. I was so gung ho at first but the daily necessity of it does make it weary. I am keeping a food journal using an app called https://www.myfitnesspal.com. I track everything that goes into my mouth. I plan every meal and bargain with myself. If I eat this, I don’t eat that. I find it very helpful to know exactly what the calories are and other components of food that I need to keep track of like potassium and protein.

It also tracks my exercise. And when I say exercise, I mean what I do. I don’t go to a gym. I track what I do around the house and garden. The data base is pretty extensive but you can also find other calculators to measure how much output you do daily. I have been cleaning out and packing up old clothes and items around the house. I have been working on the garden and reseeding the lawn. You would be surprised to find that you can burn over 300 calories an hour just doing work around the house.

For the last years, I have been extremely sedentary due to my job. The only movement I had for the course of the day was to go from one meeting to another. I sat all day. When I retired in January, I was extremely short of breath and tired just standing. Sometimes, going shopping required that I use a motorized cart to get through a large store.

Almost every day I plan an activity that will use mobility. Yesterday for example, we went to BJ’s. It is a huge store and I usually have to ride a cart. Yesterday, I walked it and very rapidly. I haven’t been able to do that for at least two years.

This is a long haul process. I have to admit, it’s horribly hard. My husband and I love to go out to eat. We spend our weekends trying new places or revisiting old. Yesterday we went to one favorite places that has a bakery in the place. Their sandwiches are on fresh baked bread. They also usually have fabulous salads, but when their homegrown stuff is in, which it is not yet. So I splurged and had a sandwich. It was fabulous. But then the temptation was on to have more “forbidden” items, which was hard to pass by. But I did. When I got home, I actually calculated the sandwich into my daily calories, and was not that far over that I could also have an enjoyable dinner. I have to learn to cut myself some slack.

This experience makes me very aware of how easy it is to overeat. People who can eat whatever they want are truly blessed. I watched what other people were eating. They have no idea how lucky they are when they are chowing down without worry. This new concern for me has nothing to do with losing weight to look acceptable. It is all about putting the right things in my body to help my kidneys. My bigger concerns are keeping my sugar low so that doesn’t impact the kidney and low protein and potassium which is hard for the kidney. That means no meats or sweets. The American diet is so based on meat that it’s hard to go out and find places that offer plant based meals. Even salad offerings have chicken or cold cuts (terrible for you).

The information out there on the Internet is so convoluted that people with kidney disease have a real struggle. I am finding that recipes that are supposed to be kidney friendly are anything but. I hope in time to be able to become very knowledgeable so that I can help others who find themselves in the same position.

My labs from May 8th showed some real improvement in my numbers. It was good news after such a plethora of bad in the past few months. It gives me hope that I can hold off dialysis.

 

 

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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.

 

 

 

 

Fat Shaming

There is a very strong movement out there that I think is wonderful and way overdue. It seems to be popping up everywhere on the Intranet. There are many web groups that are devoted to the principals of stopping Fat Shaming and Body Acceptance. It’s about time.

See, it isn’t just about just other people accepting a person of size. It is about how you accept yourself and that is the basic principal for most of these groups. They know to change society’s  point of view will include fighting the fashion and medical-insurance worlds. They have to take on the giant media world. But at least they are starting the awareness. This will start with the individual saying “no more guilt and shame.”

This is not about  eating whatever you want. It is about being healthy at any weight. And the first thing that most people say is that if you are overweight you are not healthy. That is not true. The degree of being overweight and the abilities of the person are factors that need to be included in the overall health of a person. But to judge someone by a statistic is unfair and bias. It is how the insurance companies do it. It is how the medical profession where trained. And it is darn near impossible to change those minds.

Most of these programs work with the primary concept that people have to accept and love who they are. If you have self-compassion for yourself, you will naturally take care of yourself. Taking care of you includes eating better. It means dealing timely with health issues. It means getting the care that you need when you need it. It means dealing with stress. It means, and I think this is the most important concept, not letting people make you feel guilty and bad about being you. Do not let people define who you are.

Living in a world where being Fat has only a negative connotation is difficult. You are discriminated, ridiculed and harassed. Up to now, it has been generally accepted that it is ok to pick on the fat person. We see it in our media. Look at the characters who are the bunglers and pathetic ones in movies and TV. They are fat. Fat equals dumb.

Fat shamming will probably never go away. But I am glad that it has a foothold and people are becoming more aware. I think of all the young girls who put themselves through torture to starve themselves and end up with an eating disorder. Being overweight can be an eating disorder too, but you do not see the same empathy for someone who struggles with compulsive eating. I think about how many women think they are grossly overweight and therefore an abomination and they really are not. What do you think would happen if these women were not riddled with guilt and shame?

Getting rid of the guilt and shame to me is the most important part about this new movement. Women are easily boxed in by trying to meet society’s rules. If people are free of guilt and shame, they are able to dream and be creative and do amazing things. I know many women I work with who are so focused on everything they put in their mouths. They count calories or points and perseverate on every morsel and are bound up with such guilt that it limits them to enjoy life. There is little joy for those who are so worried about every point and calorie. Enjoying one piece of cake does not make you a horrible person. It is like being tied to bully. And organizations like Weight Watchers feed that mentality. I know this to be true as I have done WW many times only to end up frustrated and shamed. Nothing says guilt like getting on a scale in front of everyone in a group, being weighed and although they don’t say it out loud…. Failing because you did not lose a pound. OMG, I think of the subjective oppression that brought on.

Being free of food shame is very liberating. And if you really listen to your body, you will eat what you need and when you need to. But that is a hard process to learn in our world. That’s another blog.

Pay attention to this change. It is everywhere. It makes me hopeful for the next generations. It has to be a better world where every individual is important and is allowed to be free from shame and guilt. Join in this fight for freedom of guilt. A healthy body can be at any size.

Here are a couple of organization’s I am involved with:

https://benourished.org/

https://www.sizediversityandhealth.org/index.asp

 

 

 

Let there be cake!

I saw the bright reflection from down the hall. The light glimmered off the protective covering as my boss walked towards me. It was time for our weekly staff meeting and we met and turned to enter the room together. It was like walking with one of the three kings from the Orient to present the holy child with frankincense or myrrh. She had the gift of the Magi. She had birthday cake.

If I was abandoned on a dessert island and could only have one food, it would be chocolate birthday cake covered in butter cream frosting with tons of roses and flowers. And there is one store here that makes the best. My boss was carrying one of those exact cakes into our meeting as a surprise for one of staff. I had to decide at that point if it was the best day or the worst.

I have been going through an on-line course call “Be Nourished.” It is a series of six modules that offer lessons and inspiration to learn to become an intuitive eater. No diet, no starvation and definitely no deprivation. It takes practice and training to quiet the mind and really feel what the body is saying. Instead of eating from emotion, you eat when and what your body says it wants. Believe it or not, when you really pay attention, the body does not crave sugar. I was surprised to see how easy that has been. I also noticed that I do not crave carbs and salty things as much.

If you think by “letting go” there would be the urge to eat everything under the sun. For some, I guess that happens. But then, it is in response to an emotion and not the actual response to hunger. I discovered I eat when I am bored. I eat out of habit. Its noon, it is time for lunch. But now I wait until I am hungry. It is weird also to actually feel hunger. And then I listen to what my body says it wants. I bring my lunch but at dinner, the choice often is salad automatically.

The other part of intuitive eating is knowing when your full. There are studies which say often obese people do not sense full. I stop for the most part when I am full or just know to stop. Sometimes the guilt of throwing food out makes me push past the point where I could stop.

I sat through the meeting eyeing with delight and patience for them to cut the cake. But when they did, I passed on it. It was only 10:00 am and I truly was not in the mood. I did not want the sugar rush that early on in the day only to crash later. I knew the cake would be left in our shared area and others would attack it later as was my plan. But I ate my lunch first. I was not hungry after that, but images of butter cream rosettes danced in my brain. Finally, I gave in and went to cut a chunk for myself. I included a piece of the biggest pink rose. It was only about an inch and a half square piece. I had to carry it back to my office. I knew if someone passed me in the hall I would get “the look.”

I actually set it behind me on a cabinet for a bit and again reassessed how I felt. The biggest hurdle was the guilt. It was so strong. I thought of all the things I have been doing for myself. This was a blatant disrespectful act and lacked self-compassion, I thought.  I spun my chair around to gaze at the loveliness of the rose which just happened to be my favorite color. I spun back to my computer to think how I would feel with all that sugar pulsing through my body after so long a withdrawal from most sugary things. I could feel the cake behind me. Its chocolate goodness filled the air and the pure white of the frosting sat waiting to be enjoyed. I spun around and with fork in hand, slowly and with purpose devoured the piece. I tasted every grain of sugar, every ounce of butter, every essence of dark cocoa.

It was done.

Was it worth you ask….. Hell, Yeah!

Frustrations

I was going to add an image here, but after looking through clip art I was so offended and insulted that I decided I would not put a picture in. Google images for obesity and take a look at the insulting and sarcastic images out there.

A two second look was all he gave it. A brief glimpse into the Internet and he declared his ruling. “It is not a reported side effect.” He had gone to the manufacturer’s website and true, it is not listed. I had scoured the internet for information before taking the drug. But here I was, three months after starting this new shot and 16 pounds heavier. He deduced it must be due to my consumption. I looked at him through tears and said, “Do you know how much food I would have to eat to gain that much weight that quickly?” He could not respond. I sat there, tears streaming down my face and said, “You are calling me a liar.”

Here I was again with a follow up visit to the rheumatologist office. At the December visit, I was having such a terrible reaction to the medication, Humira, that they thought I had damaged my heart. I was sent through many tests and had to visit a cardiologist. The results of the tests were my heart was fine and strong. I was taken off the medication and improved immediately. But there was an impact on my kidney function again. Once off the drug, I immediately started to take the few pounds off I had put on.

One month later, in January, I was on a new shot called Stelara. This shot is outrageously expensive and not everyone is approved for it. I was only because there was not much left for me to take. I have taken within the last three years Enbrel, Simponi, Cimzia, Avara, Otezla, and Humira. When I first went on medication thirteen years ago, I was put on methotrexate (MTX) and prednisone. Six months in I was peeing blood. I told my doctors who said it was because I was on Coumadin. I stayed on this drug for a year and a half. My glucose A1C went from 5.6 to 13. My blood pressure went up and I gain thirty pounds.

They took me off the drug and sent me to a specialist because my kidneys were damaged. One kidney seemed to not be working at all. The nephrologist intern said to lose weight. That was the extent of the visit. The damage was there and there was nothing they were going to do. My kidney did get better over time and my output levels improved. I also dropped the weight and then some and lowered my glucose levels too. It never returned to the 5.6 but stayed around 6, which at that time was ok.

Then, I started having kidney stones. I passed and collect over 32 stones. They were big and they were small. Some hurt terribly, others not so much. I never went into the hospital and I probably should have for the last one back in 2015. It was so big that I struggled to pass it. The labs results showed dangerous levels of uric acid in my blood plus other indicators that the kidney was not working. But no one did anything. I even showed the stone to my doctor after I birthed it and he cringed. My kidney labs never went back to normal. But I also have not passed stones because he put me on allopurinol. Kidney issues are now commonly reported now for people with psoriasis and psoriatic arthritis and they are beginning to do research on it. But no one has admitted that the medication exacerbated this situation or this correlation.

Here I was again, sitting in a doctor’s office being told to go on Weight Watchers. I have been on WW so many times I know the points for just about everything I eat. Last time on WW, I gained weight. Then the discussion about bariatric surgery came up again. I just gave up and sat there crying. I am so weary of all this. I told him I put on 3.4 pounds from the reading I did yesterday in the morning to checking the scale at night when I got home from work. It went back down the next morning but was about a ½ a pound more from the previous days. I have watched in horror this slow creeping. And yet, I have done everything I can to be careful in my consumption. Nothing changes with me in my diet. I eat the same breakfast and lunch as I have for years. Dinner is always chicken and veggies or salad most week days. I have cut out salty things including my beloved cheese.

On top of the weight, my blood pressure sored to dangerous levels right after the first shot. This is a common side effect of the shot and reported in the material. My kidney output again indicated there was a serious issue. My labs were terrible and the levels indicated were now in stage four CKD. My PCP was so concerned he called me in to the office. Again, he gave me medication for the BP. But again, the weight issue was my fault. After a week on this new BP medication, my once skinny ankles looked like Barney Rubble’s. The BP came down a bit but not enough. I was so puffed out that there were nights by feet hurt. I finally said enough of this and he put me on something else. Too soon to say what will be that outcome.

I will admit I am terribly afraid. The weight issue is such a horrible thing for me. Trying to convince people that I do not eat what they think I do is a never ending battle for me. Both doctors have recommended bariatric surgery and both doctors admit it would be very high risk for me. No one sees my health issues past the fat. I am not a person; I am a morbidly obese non-compliant patient.

I went to the patient portals for people with PsA and Psoriasis. In less than an hour, I had four pages of patient’s quotes who reported large weight gain on Stelara. It’s out there. I am not alone. And the frustration is not mine alone either.

And then I got it. The biggest selling point of Otezla is that people lose weight on it. It is true documented fact that you will lose weight on it. It is from being so sick. Those who lose weight reported diarrhea, nausea and other gastric issues. I was on it for a short time and it made me terribly sick. I could not walk straight. I felt like I was falling over all the time. It was like living with the worse hangover. It did nothing for my PsA or P.

This Stelara is a fairly new drug. It is expensive. It costs over $20,000.00 a shot. That is why most people do not get it as insurance companies do not want to pay that. It IS amazing. My psoriasis is almost gone. My ability to move is much improved. My pain levels have not been this low in years. I am grateful for this. But would people even try it if they knew there was a good probability they would gain weight on it? No, they won’t because being fat in America is the worst thing possibly you can have wrong with you.

I read somewhere that people would rather face debilitating depression and face suicide than take medication that would help, but had the side effect of significant weight gain.

I write this for people who have medical issues that may be similar in hope there is some comfort to know it is not just you. I found over fifty people who are on the same medication as I who took the time to write about it in post on a patient board somewhere. It is a small percentage of users? I do not know but I have to think it is more prevalent than that because not many people use or will write on these patient boards. Does it matter? Yes, because if we do not advocate for better treatment we will become slaves to drug companies selling poison. Doctors need to be aware that not all obesity is caused by consumption. I will probably never in my life be able to prove that. But I am going to try.

Fighting for my wellness

rolling fog

I am writing this morning for those who suffer with a chronic illness, especially one that is not widely known by lay people and the medical field. Psoriatic Arthritis is a crippling auto-immune disease that unfortunately I have. But that is not what this blog is about. It’s about advocating for yourself and you wellness, whatever the illness is. The fog is very heavy this morning outside and the grey engulfs the house like a wet shroud. It is peaceful but it reminds me of the travels I have had lately with the medical world trying to figure out what was going on with me. It is like traversing through a fog. I hope that someone who needs to know they are not alone will find solace in my words and the strength to fight on.

When I was first afflicted with this disease, no one would believe it was anything more than me being fat. I had very bad pain in my feet, lower back, and sometimes other joints. I played tennis at the time three times a week at a tournament level. It was nothing for a match to go three or more hours. Most times I would not hurt until afterwards, but then I started having back pain before the game. Stretching helped, but not much. My energy level also started to wane and simple tasks around my home would wear me out. After my divorce, the disease bloomed full on. The stress exacerbated everything along with another medical emergency. I can say that I went from occasional pain to constant in very short order. But no one would listen and the medical advice I got was to lose weight.

Funny thing, I did drop almost 35 pounds when I had the medical emergency but the disease still happened. I had recently switched to a new doctor after the one I had almost killed me with not letting me have a medical procedure I needed. Finally, when my hands started to turn into claws, they tested me. No one also correlated the funny rash that was appearing all over my body. It itched and it was everywhere. I went to the dermatologist and even he did not know what it was at the time. They thought hives possibly brought on by the stress of my divorce and move.

A year later, after the tests, the answer was psoriatic arthritis. The rash was a different form of psoriasis that did not present in the normal way of the white crusty patches. I ended up with that much later on in the disease progression. I had to make my doctor look past the weight and see the human. She was great afterwards and when I said this about that, she listened. She actually escalated my visit to the rheumatologist so I could have the help I needed. I have been with him for ten years.

Psoriatic Arthritis was so new (in the scheme of things) that there was little in the way of medicine. I was put on methotrexate (MTX) and prednisone. I felt better but after less than a year in, my sugar readings, my A1C, was 13. I never had high sugar before. I also was peeing blood constantly. I was having labs done but no one said anything until my appointment with my reheumy. He said my kidney crashed. I was then sent on a rotation of seeing specialists. I saw the most egotistical endocrinologist who said lose weight and a nephrologist, who said lose weight and an urologist who found nothing. The tests were pervasive and inconclusive. My reheumy put me on Enbrel. Slowly all my labs returned back to normal. Except my kidney function never was perfect again. My A1c went back to 5.6 and remained there for many years until slowly there was a creeping of it rising.

After year seven, the Enbrel started to fail. I then was put through two years of hell. My PsA started to flare out of control. My P was not so bad but was coming back. The first drug I tried was Simponi. I stuck with that for six months. My A1C kept creeping up and the diarrhea was so prolific, it changed my life. I will not go into much, but I learned to be very empathetic with those who have Crohn’s or IBS. My blood pressure began to be out of control. I told my reheumy I wanted off and he put me on Cimzia. Within the second shot, my glucose readings were 350 to 400. This is the shot that truly wrecked my ability to synthesize sugar. I went off everything for about two months. My BP returned to 127 to 70 and my A1 c went back down to 6.5 -7. Meanwhile, my PsA was not medicated and kept getting worse. I was also beginning to get covered in pustular psoriasis.

I had to let the drugs get out of my system and then we tried Otezla. This was supposed to be magic. It would possibly help me to lose weight. This was the worse of the worse. I felt like I was going to fall over at any minute. Walking was pure torture. It made the pain worse and I bloomed psoriasis like it was spring and I was a fertile field. Next was leflunomide. There was not enough time in between to get the old stuff out of my system before we put something else in. Then in July we tried Humira. I had tried it once before for a very brief time and it did nothing. I was hoping it would work this time.

This fall, after taking two shots a month, I had been on Humira three months. I was a mess. I knew I could not go back to the reheumy for a bit as he was getting frustrated with my inability to tolerate the drugs he was prescribing. This was a mistake on my behalf. I need to fight for a change again. But I was afraid, so I stupidly kept my mouth shut. I started taking potassium for the horrific leg and foot cramps I was having. I had one at work that had me crying in my office. Fortunately, no one saw me. By November, I was taking Advil every morning. I then added another dose at night. It allowed me to walk, but I was the walking dead. I slept an hour at the most, having to get up to pee or because of the pain. This went on for over a month. NO sleep, constant pain, itching so bad and in places no one should suffer with. I was a mess.

I had labs done and my kidney function was horrible. I stopped the potassium. I was not taking that much anyways but my potassium was a little high. My hemoglobin and hematocrit was in the dumper. It had never been so low. I have My Chart and can see my lab results. The graphs showed major increases where I did not want and huge deficits in my blood. My PCP said very little when I went to see him other than I was fat.  He actually said I should have bariatric surgery. I sat in his office in tears and thought, holy crap, I am back to square one.

Fortunately, a week later,  I went to my reheumy who thought differently. I was having mild chest pains, dyspnea, and my systolic BP was very high. He ordered cardiac tests immediately. I had an EKG, and Echo and a nuclear stress test. He said to stop the Humira and no Advil. I spent the holiday weeks in stress, in the hospital having tests and miserable. I had no strength, no energy, I could not walk, and I could not sleep. My skin was covered, my hair and scalp was awful, and I was crying every five minutes.

It is now about a month since my last shot. My skin is clearing. I have some energy and I can sleep much better. The itching was not from the P but from the Humira. I was having a very bad reaction to it. I went back to the PCP and made him pay attention to the blood work. He finally agreed that the issues, the elevated sugar and BP was from the drug, Humira. He said he thought so before, but he did not prescribe it. No, instead you just called me fat. I told him I was pissed but I did look into the bariatric surgery. I asked him if he knew that if you lose a lot of weight, and your skin sags, that they have to do more surgery and it is not covered under insurance. He smiled a sheepish grin and said yes, he knew. I asked if he knew the level of threat of that surgery for someone with a blood clot issue along with an impaired immune system, how prevalent sepsis was? Again, the sheepish grin…. Yes, he knew the risks but felt he had to suggest it. He has no idea how upset I was.

My BP has dropped forty points consistently. I bought BP meter for my home. My glucose is stable but still too high. The tests revealed that my heart muscle is healthy and strong. I told the cardiologist I am built and look like an OX! She laughed.  I had an ultrasound for the kidney and it too is clear. All of this horrific pain and suffering was from my not speaking up and getting off the Humira faster. I usually do a lot of research on each and every drug and vitamin I take. I did not check on Humira because I wanted to not be predisposed to the idea of side effects. This time I should have. There is clear clinical documentation of cardiac issues brought on by Humira. I was heading for a heart attack.

I am feeling so much better as the drug leaves my system. I just saw the PCP again because the blood work was still going down. He was concerned this time. He put me on iron and gave me a  B12 shot.  Finally.

My whole point of writing this long blog is for those who sit back and do not fight for the treatment you need. Everyone is different. I know many people who have issues with Enbrel. I had none for many years. Do not let the system kill you. If you something is not right, speak up to your Dr. They are not mind readers. If you say you feel like crap, explain it well so they can help. One thing I did not mention was I also requested lab work done monthly. I have to go anyways for my INR so I requested they add a CBC and other tests.  That was how I proved that there was a decline in my blood levels and a sharp decrease in kidney function indicating a problem. It was not enough to say I was tired and was peeing every two seconds. My reheumy added his tests and they indicated that my SED and CRP rates were extremely high indicating inflammation. My pain was truly getting worse. When you think about it, on average, a doctor has about twenty minutes to assess how things are (if you have a good doctor). Without your input, they have to go on what they know in general. Help them help you and do not worry about “what are they going to think?” They are going to think you are smart.

 

 

 

 

 

Making it count

shipwreck

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

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

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

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

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

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

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

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

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

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

I wish everyone a blessed New Year.