A journal of healing

Archive for the ‘psoriatic arthritis’ Category

A Pissy Situation: Part two A Big Fat shame

    So in my last blog I wrote how and why I am now facing a life altering situation. I have stage four kidney disease and it WILL progress to end stage renal disease and death. The solution is dialysis and a major change in the diet. After I met with the nephrologist, the next steps were a dialysis class to learn about options and what is entailed and then a meeting with a renal dietician. I was not looking forward to either.

The day of the class, I got there early. There is one thing I am seeing and that is there is a lot of money to be made in kidney disease. Fresenius is an organization around here and all over the world actually that has dialysis centers. They just opened a center very near to my house which is amazing and telling. They have lots of money. The class was in a Fresenius office suit that was beautiful and had all the wow factor of furniture and decorating. It was, however, lacking anyone at the main desk and no one showed up until I had sat there for a half hour. The “class” was just me and one other poor woman and the nurse. She was very polite on the phone but she took one look at me and that was it. I disappeared as fat people do.

She went over the different way you can get dialysis. She explained how you have to have surgery to have a place constructed for the hook up. Hemodialysis is where you hook up to a filtering machine and your blood is basically washed of toxins. They normally hook you up in your arm after you have had a fistula placed where they have combined your vein and artery and make it stronger for the constant needle placements. Sometime they have to put in a fake vein and artery connection. Once you start this, it is for life. You go to a center three times a week. If you can, you can do it at home and you can do it four times a week.

Then there is also times when they connect you for dialysis by placing a tube in your heart and you wear a port on the outside of your chest. This is done mostly in emergencies and is meant to be temporary. You cannot shower or get or it wet. It is not sustainable.

Then there is peritoneal dialysis. This is what the other woman is going to get. She is thin. I am not. The perinatal dialysis is not for fat people and the nurse made that very clear to me. They put a tube in your peritoneal cavity and you simple put solution in and then wait. And then drain the solution out. You can do this why you are sleeping if you sleep for 10 hours. That’s how long it takes. You have to wait hours in between putting the stuff in and then draining. And you have to do this every day for ever.

All of these are life sustaining with different projections of mortality. In the end, they fail… or should I say in most cases, your heart fails. All of these really stress the heart and cardiac issues are the primary cause of death. Whoopee… are we having fun yet?

The ultimate solution is a transplant. She did not go into great detail about that other than to suggest we register with the local transplant group associated with our medical providers. I had already discussed it with my doctor. Bottom line…. Forget-about-it. They do not do transplants on fat people. There is one place she said she knew of in Cleveland that will do the surgery but that’s it. And that is when they would even offer you the kidney, which is slim… no pun intended.

The nurse instructor started the class by telling us she was the ultimate authority on renal dialysis and I quote” I am the Guru.” The arrogance of clinicians is something I abhor as I had to put up with it constantly at my job. However, being the shit I am, I threw something at her using my very limited medical knowledge and she had no clue. Scary. At that point, I was so done with being ignored and dismissed. She started to go into diets and what you can eat on dialysis as the other lady asked her. But when she started in on telling me about how she just lost sixty pounds and the fight she had to do it…. I was done. I left the class. There was more to come but I was either going to cry or smack her. I went to the car and cried.

The point of me taking the class was to become informed. My doctor said I had time to take it when we got closer to dialysis, but since I am a worry-wort and need information, she said to go now. All it did really was make things worse. The images of the needles being jammed into my arm and drowning now were becoming constant visitors in my attempt to sleep at night.

The next thing I needed to do was visit a renal dietician. The word diet makes my back stiffen. The information out there is so confusing on what to eat and so forth, especially for kidney patients. From what I had read, I was pretty much poisoning myself with my dinners of chicken and Brussels sprouts. I had eaten that at least three times a week all winter. I do not eat read meat and haven’t since 1986. Since all this mess has also made me a diabetic, I am extremely limited on what I can eat. Kidney disease had new limits such as potassium and phosphorous intake. Who knew that vegetables and chicken have large quantities of potassium? I did not. So I was looking forward in a way to meet with this nurse.

She was lovely. At no time did she shame me in any manner. I will say I started out being defensive but she totally disarmed me. The bottom line is there is a lot of conflicting information out there and it is also outdated. Anyone who is facing a need to alter their diet should meet with a certified dietician.

I had to provide her with a food journal for three days. We also talked about what I eat. The bottom line is that I was actually eating a good diet for the most part. She feels, and I have to agree, that the elevated potassium is from the medications I am on and not from what I eat. She also said something I have NEVER had anyone tell me. I do not eat enough.

I am going to do more on the topic of diet after I have done more research, but this is what I have learned so far. Since I can remember, I have been on a diet of some kind. When I was a child, my mother forced me on a diet of green beans and Jello. Seriously! Now-a-days, that would be child abuse. Every time I went on a diet, I messed up my metabolism. The Dietician explained it as the “Tea and Toast” syndrome that old ladies employ. Once you restrict your body to a modified intake, the body adjusts and lives on it. The body holds on to fat as storage because it thinks you are trying to starve it. We all have a set-point of weight where our body wants us to be. Once we start to lose weight, it will shut down the furnaces so to speak, and not burn fuel so much in order to preserve our body weight. We keep feeding ourselves less and less and the body says, “oh hell no,” and shuts down. That is why you plateau when you go on a diet.

And what do you do? You cut out even more and the body again shuts down. Now you are running on 1000 calories a day and guess what…. You are doing more harm than good. Your poor body does not have enough fuel to run. You are cold and crabby and irritable. Now, because living like that is not sustainable for most people, you go off the diet. But your body used to running on 1000 calories and you are now consuming 2000, which is more normal. But your body says “over load” and you gain the weight back and then some. And when you gain the weight back, it comes back as fat. And we do this over and over.

Well, I am a perfect picture of what happens. Once when I was on Weight Watchers I gained weight. I took my WW food journal to a dietician and she said there was no way I should not be losing weight on this food intake. Weight Watchers and all the diet industry know that the cycle of losing weight and gaining weight is big business because of the constant failure rate. If it was successful we all would be thin and they would cease to exist.

The other factor that many people face who have kidney disease is that you become diabetic. And once you are diagnosed, you are then put on huge doses of insulin to bring down your glucose levels. Insulin is a growth hormone. Can you guess what happens? You gain weight….. Copious amounts and it gets worse and worse because the more insulin you take the more you become resistant to it. I will have more on this as I am doing a lot of research.

The Renal dietician gave me some great information on what to eat and what to watch out for. She recommended that I go to as much of a plant based diet as I could. That will not be hard for me as I already do not eat meat or much fish. I have already switched to a Faceless Diet. If the food at one time had a face, I am not eating it. She then told me according to what I am eating, I am not eating enough. Wow, I was shocked. She said I needed to add more to my diet but to be careful because I will gain because I have restricted myself for so long. There is a lot of research out there in this very topic of resetting your baseline metabolism set point.  I need to do more reading and I will probably set up another appointment with her. As it was, we had talked for two hours and I was exhausted.

The bottom line is to preserve the kidney function for as long as I can. I am at about 23 % function. If can sustain that, I will be ok. I am not going to run any marathons and I will have to be careful not to stress them anymore. The research I have read is not that hopeful. Basically the kidney is operating at a huge loss. There are only 23 of the “workers” doing the job that 100 were doing. Eventually, they give out and go on strike and QUIT.

There is good news in all of this. I am feeling a lot better. In the beginning of the year, I was getting so short of breath that it was awful. I could not do anything without panting. After climbing the stairs I would need to sit down. Once the weather broke, doing anything outside would have me coming up short of breath and I would need to sit. My blood pressure would go up and I could hear my heart beating in my ears. Now, I do not need to sit coming up the stairs. I can work in the yard and have been doing so. I am not so constantly exhausted. The supplements are helping, the less stress is helping and just the small modification in my diet is helping. At least I think so. The next labs will tell.

Until next week.

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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.

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.

 

 

 

 

 

“Living with where you are”

falls rainbow

Self-compassion teaches us that we need to come to a place of acceptance with whatever we have been given in life. It is the hardest thing to tackle and embrace. We use phrases like “if only” and “someday I will” to cope with that at this moment, this very present moment, I am not satisfied. Can we ever get to a state of total acceptance of what is, is just that?

There is always someone worse off than we are and then, they are people whose life seems totally charmed and conflict free. Deep down humans by nature are born to struggle and have conflict and it is not our place to measure and judge. But we do. We compare and emote how “no one knows what I struggle with.” That is a true statement. No one can know.

For example, pain is different for each being. We all have it and as we get older it is a constant companion. For me, there are times when it is overwhelming and there is no escape. This is what I have to deal with right now and sadly, it is not going to get better. Unless there is finally a miracle drug that works for me, I will progressively get worse. And the drugs I have tried have been a succession of making things worse, not better. This too is my present moment.

I am not dealing well with this, but I am trying to learn. One of the techniques I am learning is called “sitting with the pain”. Instead of ignoring it, I face it full on. I focus in my head the center of glow, the spot where the pain is the worse, and just sit with it. Sometimes it will calm down a bit to a dull shine instead of as spike of ice cold laser pain. Mediation also calms the beast.

But my life is not of a Buddhist monk. My life is filled with drama. I work fulltime in an angst filled profession where conflict and aggression are a daily part of my day. I have issues in my home life with family squabbles and pressure. This is a normal life and it is challenging.

What I am trying to learn is to be ok with everything. To accept this is what my life is and stop struggling. It is the struggle that exacerbates the pain. It makes sense. If someone ties you up, when you struggle against the restraints, it is painful. If you lay there and accept it, it’s not so painful.

But I am not one who quits either. I am not ready to lie down and give up and let this disease take over and make me bed ridden. I find myself very angry at times with my limitations. That anger has been getting worse because I am not at a place where I easily say, “Ok… that’s enough for today.” So I push myself too far and then end up in excruciating pain. And it is hard on my husband who often is the brunt of the anger. He is used to me doing everything. He sees the deterioration in my strength and stamina.  I think it frightens him. He is also used to be taken care of and he is not the best caregiver. That too is something that worries me.

Self-compassion teaches us to take care of us first. If we do not take care of ourselves, no one else really will and there you are. That is the heart of it. Self-compassion is not being selfish. It is learning to make the individual moments of your life the best they can be. No one else in the whole world can MAKE your life any better than you can for yourself. It is easy to preach these concepts. Much harder to live.

 

 

August Garden

aug garend 3  The garden is beat up and truthfully, so am I. We have had 90 plus degrees every day (28 days to be exact) and very little if any rain. It finally rained yesterday, right after I watered all the pots. If I knew that was the key to make it rain. Actually, I watered every other night all summer. I also make up buckets of plant food water and give them that. It is a lot of work. And I am tired of it.  I will long for it around January, thinking that the work was no big deal. But the heat and humidity has barred me from sitting out there until much later at night.

aug garden 4 I do not bother with the lawn. If it does not grow we do not have to mow it.  Usually I pop out to the chair around 7:30 after feeding my bunnies, who usually join me around that time.  Petee But with the heat and the bugs, it has not been very fun.  I try not to use bug spray because… well, I am covered with Psoriasis lesions.

This is a whole other thing with this summer.  I am now on my sixth drug in a year. I went from Enbrel (after 8 years it stopped working as they all do)  to Simponi (gave me high blood pressure, like stroke level)  Cimzia (raised my blood sugar to over 400 with one shot) Otezla, the glamour drug at $80.00 a pill (which was the most horrific one of all, I was so sick on it and it made my arthritis worse) to leflunomide, (raised the blood sugar back up there to almost 400) to Humira. I have only had two shots of Humira and it is helping the PsA but not the Psoriasis.

aug garden 5  As beat up as these plants look, so am I. I am grateful for the relief on the arthritis (PsA), but I am a long way from where I was before. I can only walk short distances, and at least I am not crying when I get done grocery shopping. But the lesions are awful and they itch and hurt. My legs and arms and scalp are covered.  But the next thing issue is was something that I have been trying to avoid for the last 8 years.

Diabetes.          aug garden 4  Ever since I was old enough to go to the Doctor, they have tried to make me out to be diabetic because I am fat. Up until they started giving me all these very strong drugs, my blood glucose has been perfect. It never was above 5.5. When I first was truly diagnosed with PsA, they gave me a cocktail of Methotrexate  (MTX), prednisone, and Advil prn. My A1C went to 13 and no one caught it for a while. To bring it down, they gave me Metformin on top of all the other crap. The result was my right kidney failed. They took me off of everything and after a while, my kidney came back to about 41%. The sugar came down but it never has gone back below 6.  Now it is back up to 8 or 8.8 even off the last drug that increased it.  So now I have to take Januvia in the am and a shot of 10 units of insulin at bedtime. Already my morning readings are improved after two shots so I am hopeful we can “jumpstart” my pancreas again. If not, this is a life sentence.   My doctor told me this, thinking it would help: “I had diabetes when I was 29 and I got rid of it by losing 40 pounds.” Well isn’t that ducky? At 29, I did not have any health issues! All this shit started after my divorce when I was 47. But I could go off on a tangent about how trauma affects your health, but I am saving that as I am doing more research on it.

aug garden 1  What is keeping me together is we leave for the River next Sunday. We will be gone for 10 days. We have people staying at the house with the “kids”. They use our house as their vacation spot.

Bro Brow cooling off I am going to try to stay cool, get through this week and go to the one place in the world where I feel safe and grounded. I will have a ton of pictures to share.

Risky business

ashwagandha

If you knew that doing one thing in the hopes of a better situation would automatically cause another difficult situation to occur, would you take the risk. If you take any form of medicine, you do that daily. There is not one chemical drug out there that does not have some risk when you take it. They even put this in writing now on the drug pamphlets that come with the prescribed drugs. “Your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.” Are you willing to take those odds?

Sometimes there is no choice. You have to live with the side effects. I have gone through a series of drugs and have come up with some real doozie side effects. I took a drug and after four days it covered me with painful hives from head to toe. The answer from the doctor was stop taking the drug. But I was taking it to fight off an infection. I have gone through three major biologics and now a pill for my psoriatic arthritis in less than a year and half. I reacted to one with blood pressure readings that were stroke level. “Stop the drug.” The next one put my glucose over 350. “Stop the drug.” The newest one causes incredibly leg cramps. But I am sticking with it because it is helping my arthritis and my skin is clearing. But I only take half a dose.

In my research to find out more about the side effects of the Otezla I started reading about natural remedies. I have always preferred a holistic approach to my wellness. I have dabbled in alternative medicine now for years. I even worked with a homeopath, but got concerned with the lack of certification requirements for that approach. I have participated in energy therapy training. I have been interested in green medicine or herb tinctures for years.

I have been learning about Ayurveda medicine and find it fascinating. There is so much about it that it makes great sense to me. I like that the practice really delves into the body makeup and the whole person from the on-set. I have never had a doctor ask me if I like or tolerate spicy foods. But in Ayurveda, everything about you from the foods you eat, to how you relate to the world is important and part of the symptom management.

What started me looking was the horrendous leg cramps I was getting. I also noticed I had an eye twitch and was experiencing sleep issues. The solution was magnesium. I have been taking 400 mg at night and the leg cramps have all but gone. But I was also waking up in the middle of the night with anxiety attacks and only sleeping for four hours or so and not getting a good night’s sleep. I added melatonin for sleep but I was worried because you are not supposed to take melatonin for long periods of time. I also started to have really bad nightmares.

In my research I came across an herb that is supposed to be a wonder remedy. Everything I have read about this herb is amazing. But I do not go by the ad information; I go to patient user boards and medical evidence based journals. What I find amazing is that this herb and so many have been around for thousands of years. You want to talk about evidence based time studies. We do not have that amount of prescribed time on any man made drug. Right there is reason to get interested.

The herb I am trying is Ashwagandha (Withania somnifera). It proposed to do so much for so many areas of wellness, many symptoms I experience. It helps with sleep issues, boosts the immune system, can lower blood glucose and also blood pressure. I encourage you to look it up because there is a lot out there on this herb and I do not want to sound like an ad.

I am fascinated with the possibilities of getting off as many man made drugs and all their rotten side effects as I can. When the drug I took that raised my glucose A1C to 9.3, the remedy was to take another drug at night to bring it back down. The second drug costs $421.00 a month (without insurance). It can cause pancreatic cancer. Wahooo…. Just what I want. I truly cannot tell if it lowered the levels, or getting off the drug that caused the higher level is what is lowering the levels. I would have to go off it and see what happens. Another risk, but I think I have to try it. I cannot take certain cheaper meds like metformin because my kidney was compromised years ago when I was prescribed a pharmaceutical nightmare. This is a never ending circle that many folks get caught in as the body ages and they start taking more and more drugs to feel better.

My cholesterol was normally low most of my life, again surprising the doctors. It has steadily increased over the years to the point of being 238. My doctor wants me on a statin to bring it down. I tried it and had an immediate reaction and said no. I started taking fish oil religiously this winter. My last lab showed my reading at 188. I dropped 50 points in two months with taking the fish oil which costs nothing. My husband also got off his prescribed statin and took fish oil and lowered his back down significantly as well. Fish oil has no side effect and is a cheap OTC solution.

The issue with non-prescribed and non-regulated herbs is dosage and interactions. A prime example is teas. Chamomile is a very popular one for calming and sleep. It can significantly thin your blood if consumed in quantity. What is that amount, I do not know. Many herbs and minerals can become toxic to the body and do more harm than good if taken in large doses, and that matters by the individual. If the government steps in to regulate this area of health, the cost will skyrocket. The Ashwagandha could possibly aide me in getting off two drugs, cost together over $650.00 a month (uninsured). A bottle of 60 capsules cost me $16.50 and that was a high end product and an expensive store.

I will share with my GP doctor next week when I see him my viewpoint on delving into more natural remedies. He is going to be surprised with the lab results as my A1C dropped over two points also in two months. He is a young Indian doctor and we have talked about natural remedies. I am not sure if this is a conflict of interest for him, but I want him to be aware. He did not prescribe the arthritis medications and was upset with the reactions I was having.

I also want to be clear that your wellness is a team effort. Unless you are a doctor, self-prescribing can be dangerous. But I also feel very strongly about forced care plans. I am very warry of any practitioner who promises the world or threatens patients who they deem non-compliant. “If you do not take this medicine I will not see you.” But patient centered care is my vocation and a whole other topic.