A journal of healing

Archive for the ‘disease’ Category

A tribute to my friend

  She lay there silently, so small in the bed. She was peaceful. Her chest rose and fell with each taxing breath and occasionally I could see a shudder from her heart. My friend was dying. How did this happen so abruptly, I thought to myself. But it wasn’t fast at all. It was years of this battle and much pain. It seems so inconceivable that her fight was coming to an end. The best thing was she would finally be able to be with the love of her life again.

I met her when she came back to work seven years ago. I was hired while she was out on sick leave. She had fallen and shattered her leg right below her hip when she was trying to open the garage door and the rope broke. At first, she seemed very distant to me. She was the recruiter for the company and was a bit put out that she did not hire me. She was always protective of her new hires. We worked in the Human Resource Department but I was in charge of training. But we attended the same meetings.

It took a while for us to get to know each other. We were almost the same age. She was 8 months older. I used to call her the ‘old lady’ as a joke. Our sense of humor was the same; flippant and rude and on the lewd side. Once we became friends, she would whisper something funny in meetings that only I could hear and get me in trouble because I could not hold back my giggles.

I do not remember how or when, but somehow, she began to trust me. She shared what was going on in her life. She had ovarian cancer. She went on heavy doses of chemo and that may have been one of the reasons her leg broke. She was wearing a wig but it was such a good one and I never knew. She was on strong pain medication as the leg did not heal well. She would go out soon for surgery to have the pins realigned as they had moved and were causing her great pain. Of course recovery for that would be difficult with the cancer and chemo.

But through all that, she always had time to sit and ask, “How are you doing?” And she was really concerned. It was not just a polite inquiry.  We talked about the strong medications we were on and how it messed with our weight. She would rarely complain, just more vocalizing her situation. She was never sorry for herself and distained pity. We would share our opinions of those we worked with finding that we had the same concerns and likes.  They did not treat her very well at the agency. But they did not treat many people well there.

She worked as much as she could. Then about two years ago, she started to really have some problems. The chemo she was on was just about killing her. She would make it to work and put in a full day. But she would come to my office just to breathe and relax and let the pain wash over her. She knew she could tell me what was going on without judgment. She was not eating or sleeping. She was exhausted and her counts were not great. She was going to go on something else. But this was the last fight. If this did not work, she was going to die.

She started on the new chemo and things seemed to be looking better. But the chemo was hard on her. So last fall, she finally decided that she needed to put all her energy into this process and stepped away from work. She was not retiring or quitting, she was just taking a leave. It was the best thing for her. I would miss her at work. I threw her a little luncheon with just a small group of us who knew what was going on. We gave her gag gifts and had a lovely time.

Four months later, I had to retire. My battle with my ongoing health issues forced me to make the same decision she had. Life was too precious to let the miserable atmosphere at work prevail in our lives. They threw me a party, but did not ask her to come, which made me angry. I retired, not planning to ever return.

But the month before I left, I found out that they were going to fire my friend. She was on leave, but it was at that point an unprotected leave as she had used up all her FLMA. Supposedly, her doctor has sent a letter saying she would not be coming back. The truth was the doctor’s letter said she would be out for another six months. But they let her go anyways. It hurt her to the core. Her job was everything to her. When she would go to chemotherapy, she would try to recruit nurses. She was always supporting things on their Facebook page. She believed in the place and had hired a majority of the clinicians there.

We had lunch once in a while when she felt up to going out. I went to visit her at her house and on one occasion when the weather got nice we went to a park for an afternoon. We would chat on the phone for hours sharing recipes and memories. She told me of the death of her husband. They were married for 12 years and had three boys. One day, he was killed on his motorcycle by someone who was not paying attention. She never stopped loving him. She would always share that she considered herself still married to him, 43 years later. One visit she told me about how she tended his grave and that she was going to be next to him.

In the beginning of June, my husband and step daughter were headed for our annual vacation to the Thousand Islands. She has called the night before and I had missed the call. Since I knew our chats were usually lengthy, I did not call her back. Then, I did the unforgivable. I forgot. Three weeks went by and I kept saying I had to call her. I wanted to wait for the “right time.” And then the day would get away from me.  I will never forgive myself for missing that call.

I got a text from a mutual friend to say she was in Hospice. I was devastated. I called her son who told me it was fine to come see her. He and I chatted for a brief bit. Her last words were to him. As he was leaving the night before, he called out, “Love you, Mom.” And she replied, “Love you too.” It was the only thing she said all day. She was unresponsive after that.

I did go see her. I said good-bye and wished her well on her next journey.  I knew her husband would be delighted to have her back again. I knew she was headed for a better place that was pain free. But I was going to miss her.

It will haunt me for the rest of my life about not calling her back. Did she call to say good-bye? She had fallen very ill and knew her fight was over. Our previous  phone call, she has said she was doing better.  I knew that the previous couple of months she had been fighting an infection from a tooth. She did not tell me how bad it really was. I should have guessed something was up because she would not physically get together. That was so like her to not have people worry about her.

But my friend is gone. What a lesson she left me with. Now is the most important moment of your life.

 

 

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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.

 

 

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.

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.

Everyday hero

Cubid

There are few instances of people nowadays that are in my life that I would say are heroes or at least the bravest people I know. But I have been blessed to have someone in my life right now who I would call a hero. She works with me and at first; we did not hit it off. But as time has gone on, we have become work friends.

This woman does not see herself as anything but just getting along in life. Many years ago, when her three boys were little, her husband made a left turn into an intersection on his motorcycle. He died because someone did not see him. She rarely talks about it. I did not find out the whole story until recently when she was telling me it would have been her 40th wedding anniversary. She never remarried. She dated rarely and only after her boys were grown and on their own.

She is our recruiter for professional staff. I was not hired by her. She was out having surgery on her leg. A few years back she had been trying to open her garage door manually when the power was out and the rope gave way and sent her flying. She shattered her leg and hip. She was out having the pins redone as they had worked loose and were hurting her. When she came back, she was a bit cold to me. I did not realize that she feels possessive over her hires like a mother but I was not part of her flock. It took a while to break down the wall.

I found out that she also has ovarian cancer. I took great effort to make time every day to see how she was doing. As we got to know each other, she would inquire about my health. Turns out one of her sons has rheumatoid arthritis as did her husband. She was very concerned about the drugs I was on and the reactions I was having. She listened authentically to my concerns. She would always say, “Well, hang in there.”

I am not sure what or when, but we became pretty close. She would come to me when work was getting to her. Not much really got to her, but the pettiness of work really did. She does not like everyone in the HR department and shares her feelings about the inequities she sees. She has been doing her job for many years and is very good at what she does.

But then she would tell me of her journey with her cancer. She bravely faced infusions of chemo last year every four and then two weeks. It was killing her. She never wavered though and other than sharing with me and two other girls who were cancer survivors, she kept it to herself. Her doctor wanted her out of work but she persevered and kept working. There were days when she would walk all the way downstairs, back and forth with candidates who she was interviewing. She told me her bones hurt her so bad from the chemo that the first thing she did when she got home was take an oxycodone. She lives alone with her dog Jethro who she cherishes.

Every day she could make it in, she was as pleasant and helpful to new people as she always is. To look at her, you would never know the severe pain and misery she was going through. She would always ask how I was and I stopped complaining about anything. What I face is nothing in comparison to her journey.

About a month ago, they stopped the chemo. Her doctor told her it is going to kill her faster than the cancer. They also discover new cancer cells in her chest. The doctor feels he can surgically remove what they see. From then, they will start a new program with her of less aggressive chemo. She goes under the knife next week. We took her out for lunch this Friday as a treat and to bolster her. I think it was more for us.

There are very few people I know who are as brave as she is. She always is concerned for others. She asks little of her family and of us. But we all are there for her. So if you read this, I am asking that you take a moment and send my friend some healing energy. And then be grateful for your wellbeing.

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.