A journal of healing

Posts tagged ‘health’

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.

 

 

 

 

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Under the Weather

fog and heron

Springtime has finally arrived here. It was gorgeous yesterday and today holds to be even better. My husband is looking forward to hitting the links and chasing a little white ball around. I am hoping to have enough energy to work in the garden.

It is also flu season and there is some nasty stuff out there. I have caught a cold and I am hoping it does not get to be anything more than that. It is unusual for me to have more than one cold a year, but this past winter was an exception. I think the warmer temperatures helped to spread more yuck.

Jan backyard Garden in January 2016

My work is also a breeding ground for germs. We have many people who are out visiting sick people and they come in and spread stuff. Around Christmas, one dietician had something so bad that it took out her whole department. One girl ended up hospitalized. Because we all share the same kitchen and bathroom facilities, it spread across the whole HR and Ed department. I got it.

One lady I work with is over 77 years old and she has been fighting this upper respiratory since January. Another lady who has asthma and bad allergies has just been diagnosed with walking pneumonia.

Louie 1

The University Medical Center  we are connected with is on high alert. They have a break out of a norovirus which is spreading like wildfire. They are sanitizing just about everything. Our facility has a hired out cleaning crew and we are lucky they vacuum.

rhoda 1 2015

The bigger issue is that people do not stay home when they are sick. We have sick time. But people do not want to waste it on colds and other short term illnesses. They hoard it in case something major comes along and they need it for a longer period of time. I can guarantee if I came down with something this weekend, there will be others. Scary factor: we all know hand hygiene and infection control protocols.

I am super glad the weather is improving and I know I will too. Working in my garden and listening to the birds will be the best medicine I can have.

 

The eyes have it

eyes    Today I feel like I reached the bottom, which is fine and now I am on the way up again. So true confessions, there was more going on with my life which I did not share because I did not know all the facts. Something occurred today, which has swung the pendulum. One thing I have learned in the past three years “hang on, nothing stays the same.”

The short story is on New Year’s Eve, I went for an eye appointment to get new glasses. It has been four years and my glasses broke right in half. I had an old pair which was great. Seems my prescription for the past ten years has not changed much. Wonderful!

However this time, the doctor found an anomaly in my eye. She said my optic nerve was enlarged. I made an instant appointment to see a specialist. And then, being who I am, I started Googling.

Turns out that the condition has a variety of names, none of which I knew. Seems the cause of this condition can be from medication, blood pressure, fluid, spinal fluid, and the one that stuck with me…..being obese, which is called papilledema. When I read that, I was devastated and furious. I cannot find anywhere what the connection is and why this can cause this condition.

The first technician I saw today looked at the readings and info from the first doctor and said she felt the readings indicated a normal range. But the Doctor said to do tests anyways. So I went through a battery of tests for about an hour. I had different drops and stared at all sorts of bright things.

This was all fine. Leading up to the appointment was not. All the information I read was….well, it just added to the failure I have been feeling about myself lately. I felt “I did this. I deserved it. If I was thinner, this would not be an issue.” No one can beat themselves up like I can. It was a week of this and it got worse and worse. I would check something on google during work and get upset and then come home and read it again, only adding to my angst.

The bottom line is this. I do not have papilledema. I have the markers for MAYBE glaucoma…. Or it is just the way my eye cup is. She said do not lose any sleep. I asked her if this had anything to do with being fat. She just laughed (nicely) and said no. It may be nothing at all, but without any past history she can’t tell. I may have been born with this enlarged opening. She said to just make sure I have an eye exam every year. We are going to do more baseline readings also. She said actually my eyes were healthy, pressure and depth and thickness of the cornea all were fine. I finally let out my breath.

I had been seeing the same eye doctor my husband had for years. I saw him for about 8 years. Last year, my hubby had to have surgery for cataracts that were so bad, one eye was almost totally occluded. And of course, my husband did not say anything. When they went in, it was much worse than they thought and he was under the knife for an hour…. for a fifteen minute surgery. He is now also seeing someone else.

If I had a vision loss of any kind, I would have known it. I am fanatical about my eyes. I am a photographer. I express myself though the lens. (I don’t post many here) I do so much with my eyes that they are absolutely precious to me. The punishment I put myself through this past week just is a demonstration of what people like me do to themselves.

The upshot of all this is I have this safety net in place to help me protect my eyes. I am ok with her prognosis and diagnosis as she was pretty convincing that this really was not an issue, but preventative.

And I think I finally faced up to some challenges I have about my health. So with this hurtle out of the way, I think things I will start to pick myself up again. I am up for the challenge.