A journal of healing

Archive for the ‘body’ Category

Don’t take this personally

“You’re too sensitive.” “I meant this is a good way.” And my favorite: Don’t take this personally.” Everyone time someone says those things; I know it is going to be a dagger in my soul. I am too sensitive. I will take it badly. And I most definitely will take it personally. Because that is the honest intent. Prefacing statements with “honestly” or to “tell the truth” does not excuse the fact that you are about to be mean. “It’s for your own good” never really is. It’s about you feeling superior to me.

Being an empath is not a pleasure. I see right through most people’s crap in a heartbeat. It does not mean that I can shield myself from the hurt. I never learned that part of survival. Because of that, I am very vulnerable to insults, even if they are shrouded in good intentions. They never really are good intentions.

When you are a large woman, you are a walking target for these kinds of insults. People feel so justified to say, “You would be so pretty if…..” “or you have a beautiful face….” People tell you how much better your life would be if only you could be more like them with statements like: “you should run with me some morning.” Oh Honey, if you really knew me, you would know I can hardly walk some mornings due to psoriatic arthritis. But you don’t really see me, so thanks but no thanks.

These comments do more than just hurt me. They trigger me. My family never lacked in cruel comments. It was a sport to see how clever someone could insult another. I was an enigma in the sense I was the only woman in my family who was large. I mean I am the tallest by 5 to 7 inches, I wore a much larger size (my Mom was a zero to 3) and I had boobs. I spent my childhood listening to “how much better I would be if I only…” This is emotional abuse by the way. I was deprived of treats, often subjected to ridiculous diets like green beans and Jello and constantly harangued about my shape.

[And this is how just writing about my childhood trigger me to justify it. I realized this when I went back to reread what I wrote:] My mom was in charge of the food in the house and meals were excessively high in carbs and fat. There was always soda and cookies available because the other siblings could gorge on them. They were thin. I was an extremely active child and teen often spending the day swimming or riding a bike for miles. I was not allowed to sit around and watch TV or even read. As a younger woman, I was very active. I only slowed down because of the PsA and if I did not have it, I would still be playing tennis and other activities as much as I could.

My family’s constant barrage of self-improvement comments were actually telling me how I failed. There was little said to counter the demeaning of the words. It successfully made me feel like a failure and that was the intent. I know this now, but it scarred me. So now when people make their veiled comments, I hear the disappointment in my mother and father and it brings me back to that time. When you have PTSD, it does not take much to trigger you.

When you grow up with a sense of failure, you have two choices: over achieve or lie down and whither. I overachieved. My success had not dampened the hurt I feel when someone is critical. I am so sensitive, that a look can set me off. I feel people’s disdain of me even if they think they are hiding it. I read people very clearly. It does not matter who or what the relationship. It does not matter if I love or hate the person. Their intent comes beaming through.

Next time you go to make a comment, try to remember that a large person already knows they are large. Chances are they have spent a lifetime trying to meet other’s expectations and have failed. They may not be strong, and your words will haunt them for days. You have no right to demean someone ever. If you think you are helping them, you are not. Get off your white horse and stop being so pompous. Learn that “right reflexing” (the attempt to take charge of someone else’s change process) does not motivate anyone to change. Understand your motive before you speak. Send love, not hurt.

 

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Fat Shaming

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

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

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

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

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

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

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

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

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

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

https://benourished.org/

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

 

 

 

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.

 

 

 

 

 

Death sentence

clown 2

Every year since I was very young, this time of year brings some form of bad illness or pain for me. It has been that way since I was 11 years old. I cannot sleep at night. I wake up and I have pain or an issue of some sort  and insomnia becomes the norm. I have written before about this.

I can remember as a young girl getting up in the dark and going downstairs to see the remains of my parents drinking all night. Their favorite glasses would have remains of watered down liquor and the ashtrays would be full. I remember one time when I had something wrong with my shoulder and could not raise my hand above my head. They thought it was bursitis, but I know now it was a Psoriatic Arthritis flare. Back then, they did not even know what Psoriatic Arthritis (PsA) is. Many medical providers still don’t.

I have been struggling the past two years trying to find the correct drug to manage my PsA symptoms. Currently I am on Humira, which is if nothing else, has not caused a lot of side effects like some of the other medicines I have been on. But it also is not working. My labs show my SED rate and other indicators show high amount of inflammation. I do not need any lab to tell me that. On top of the PsA, I have just plain old psoriasis. I have never had it as bad as some people get it until now.

I want people to understand. Psoriasis is an auto-immune disease that affects 7.5 million people or 3 % of the world. There is no cause and there is no cure. The skin becomes inflamed and the reaction varies from person to person. I had been lucky not to have many lesions. These are crusty little to large patches of bubbled up skin that itches and burns. The Humira is not working on the Psoriasis at all so now I am covered with very itchy skin and scalp. My legs are mess. A component of Psoriasis is Inverse Psoriasis which occurs in very sensitive places. I am also having an issue with Inverse but I will save the details. However, this is what is keeping me up all night. Anyone who has a mosquito bite can tell you how bad an itch in the middle of the night can be. Imagine that it not only itches very badly but burns.

On top of all this mess, I have been having terrible back pain on my left mid side. I know it is my kidney. I have at least three large stones in there the last time they looked, and they are so big they will not pass. When I lay down, they are pressing on my kidney. By an hour after I get up and have some water, I am ok. I wanted to know why now this was happening on top of my labs showing a change in my Creatinine and GFR.

My Doctor is a young Indian who is usually very patient and concerned about me. He subscribes usually to less is more when it comes to medicating. I have been seeing him for about five years. He does not like the fact that my rheumatologist has been changing my medication so much and does not really understand why we cannot find the right drug.

This visit was terrible. He told me that my kidney had not failed. Yes there had been a change in the creatinine but not that significant. (The lab reading was as high as it was when I struggled to pass a huge stone two years ago) He said the GFR was not a reliable indicator. (So why have the test?) My Systolic reading was forty points higher than normal for me but the diastolic was only 73, which is my normal. And he dismissed the back pain. He also told me to stop taking a potassium supplement I was using for the leg cramps.

What he did say was so painful I started to cry. He said I should go get bariatric surgery. In all the years I have seen him, he has never said this. My last doctor said it would be extremely dangerous for me to have the surgery because of my blood clotting issues. Factor V Leiden is an inherited disease and is passed down through families. It has nothing to do with my weight. He seemed short tempered as he spoke, like my visit was a bother.

He said my blood pressure is out of control. That’s not true, it has been steady and normal level for over a year and a half, since they took me off one shot (for PsA) that raised it to dangerous levels. He said my kidney issues are from being overweight. I said I have stones in there and this has not been a problem since May of 2014. He saw the stone I passed then and was amazed. He seemed to totally forget all that. I had to ask him to schedule me for an ultra sound to see what is going on, because this was NOT normal.

There was more he said that was harsh and I sat there with tears streaming down my face.

To me, he has sentenced me to death. I cannot express how much this affects me. I have a reaction to the concept of bariatric surgery that is so visceral it makes me physically ill. You know when something is very dangerous, and your gut tells you…”BE WARE”. That is what happens to me. When I was younger and able to exercise, the thought of going under the knife did not bother me. I wanted the help. But I was told I was not a candidate way back then. In those days, you had to go through hoops to get the surgery. In most cases, insurance did not cover it.

Now I am 62. I have a diagnosed blood condition and a chronic illness. Now they will cut you open if you simply ask. I argued back with the doctor that the long term success rate they are now finding is not great. This surgery is still new medicine. This was when he made a comment about dying sooner from being obese or having a longer life. I asked, “what if I die from the surgery?” His response was I was high risk, but he felt it would be worth it. REALLY????

Many people gain all the weight and then some back. But even if they do not, the other complications are huge. I do not know anyone who has had the surgery personally who said they would do it again. One friend had such terrible anemia, she had to have transfusions. And she is one who gained everything back. We let one employee go because she was out so much. They found another reason to terminate her, but she never recovered well from the surgery. She was not obese. She was plump and did it for cosmetic reasons. We just had one young employee who had two toddlers die a few months ago from the surgery. She became septic. She was 28. I know of someone locally who had a debilitating stroke from the surgery and is still not and never will be the same. One friend had it done two years ago and she has kept the weight off, but she looks 60 to her actual 40 years of age. She was much prettier heavy.

I could go on for hours about this. I have cried every night, and I am fighting them now. My point is that this is what people of size put up with all the time. I went to the doctor because I think I have a kidney stone trapped. The labs indicate it, my pain indicates it, and I needed professional help before it gets worse. My physical abilities are in the crapper right now because I am not properly medicated for the PsA. I can hardly walk some days. The pain level is extreme. My skin is on fire. I am not sleeping because of this. I cannot get into the rheumatologist until January 3rd.  He never has open appointments because rheumatologists are in such short supply. And my PCP is telling me to take a risk with my life and have a surgery that could very possibly kill me. ( and my gut says it will)

I do not think I have ever been as depressed as I am currently. I am not saying that being thinner would not resolve some things. I am not that stupid. I feel trapped in a world lacking of compassion, ignorant and insensitive, which is leaving me to suffer with vacillating issues of either continuing to suffer in pain or commit suicide, which is how I feel about the surgery.

 

 

In hot water

fogfalls   This sound really egotistical and it is not what my intent is. I am sincerely amazed how intuitive I can be. It is not always a great thing but it has kept me alive. This may seem like a small issue to some, but what happened this last week tells me it is important enough to share. Maybe someone else is like this and does not realize it. I am talking about stress and what it does to you.

About a month ago, I had my heating system annual tune up and cleaning. The guy who came to the house was very nice. The same week, my mother-in-law was in the hospital dying. The day he came, we were all supposed to meet at the hospital to talk about a care plan. I wanted the guy to hurry up and finish. I went to check on him and he starts telling me my system needs to be drained down and a new valve needed to be installed; the same valve that was replaced two years ago. Every time they come out, they find something wrong with the system. When we turned the heat on, it dripped two drops. He said he was going to adjust the pressure and some other things and then forty minutes later he left. They would call me to set up an appointment for the next work.

As the weeks went past, there was nary a drip. The system is a gas fired boiler that circulates hot water throughout the house. The heat is not drying as force air and is very cost efficient. And boilers last for decades. The parts that support the system do not. Since I have been here fifteen years, I understand that things need to be updated. The system is very quiet except for an occasional tick of the baseboards.

What was happening when the system kicked on was this rush of water coming into the system that sounded awful. It was very loud in the kitchen and the first time it happened it scared the crap out of me. I thought we sprung a huge leak. I went downstairs and all was well. We were not home a lot the next weeks and the weather was warm so it did not happen too often.

But every time it did, I would tense up so bad. Stories ran through my head of imminent disaster. It was amazing how loud the rushing water sounded. I thought that maybe he put the pressure down and that eventually the water would stop doing it. But it didn’t.

But my body flared. The intense reaction was so visceral. My home was in danger. I love my house. It is my safe place. I was not sleeping and a lot of other things were happening in my body. My morning glucose readings were very high. On top of the boiler, the garage door opening system broke and needed repair. I discovered that on Tuesday of last week when I came home and the safety eye was laying on the floor. The door does not close without it facing the other eye.  Then on Wednesday, the ice maker crapped out.

Luck was totally in my corner. The door people had an opening on Friday and could come out to fix it and tune up the opener. My husband was off and home. Perfect. He knew I was upset about the ice maker so he called someone and they could come on Friday too. We also had scheduled a tune up for my car on Friday, which was supposed to be no big deal. But you know how that goes.

I was so freaking frazzled that by the end of the week, my body literally was on fire and I had a diverticulitis attack. I was not sleeping and my hands and hips and back were flaring so much I could hardly walk. I went to work in the morning, after dropping my car off with the intent of picking it up and being home when the icemaker dude was coming. Since I was going to be home, I called the heating people and after a run around, they were going to send someone out as well in the afternoon.

The heating chap was a rather nice young man and he listened to what was going on. I told him the story of the valve and he of course was thinking his fellow worker was correct. But he heard the rushing of the water and looked at the gauges and said there was not enough water in the system and that was a big issue. He wanted to at first drain the system by going all over the house and opening up things… and I thought I was going to be sick. Then he put some water into the system and he thought the gauge was broken. He drained some water with a hose he had and a bunch of other things. He had so many scenarios of what was wrong and he tried many things. Nothing was wrong with the gauges. There just was not enough water in the system. He filled it back up and then went out to his truck and called the guy or the office. I went into the other room. He came back in still on the phone for a while. Finally, he called for me. He looked funny.

Seems I was absolutely right. The guy before drained water out of the system and reset the gauges improperly. The poor boiler was trying to operate without the right pressure or water. He could have ruined the system. There was nothing wrong once he filled it up correctly and reset the gauge. It has been quiet, no drip and is keeping us toasty. They offered me a maintenance agreement and gave me such a deal on it as an apology that it paid for itself. I get two years of free tune ups. Good customer service.

But what amazed me is how much my body calmed down. I spent the rest of the weekend in a much better place. I slept better than I have in a month. My glucose readings dropped fifty points and it is not from eating better, that’s for sure. My physical reaction to the loss of safety in my home was not controllable because I did not even know how bad I was until the things were fixed. I feel so vulnerable because I do not know how to fix the mechanics of my house. I hate being fleeced.

The car was fixed and only what I needed. The garage door works terrific and he fixed the issue of why the eye fell off so it won’t happen again. It did once before and I got it back on. The icemaker had to be replaced but I love having ice so it was worth it. The guy who came out was very nice and lives nearby and fixes all kinds of appliances. It is a good feeling of having someone like him available. He was honest and fair. All is well and there is a safe feeling again in my house.

Now, if there was only some way I could fix what happened on Tuesday with the elections……..

 

 

 

 

Autumn Challenges

pumpkins

This has been an amazing week.

I used to love autumn. It was my favorite season. So much so I chose to be married the first time in October. I love the cooler temperatures and the colors of the trees and the crispness of the air. I loved going back to school as a kid. I have always thought of fall as the season of change.

But as things in my life happened, I noticed a pattern of not so nice things happening in the fall. It changed my favorite season to be late spring and early summer, with June being my favorite month.

I started the process of my divorce in November, I was diagnosed with Psoriatic Arthritis in October, I went through several seasons of terrible medical issues, including the possibility of Ovarian Cancer discovered in September but by January the next year was dismissed as just a dermoid tumor. The list goes on includes thyroid issues, severe kidney problems and pituitary tumors.

I dread fall now for those reasons. But I also hate the dying of all the plants. One morning, I will wake up and my garden will have been killed by a frost. It devastates me. All that work all summer to have it gone in one night. I fight it by covering things for a while but then I know I have to sacrifice all the flowering plants. I do bring in many and host them for the winter, but the impatiens won’t make it. Even the large maples will shed their canopy and the garden will be barren. The animals will disappear for the most part, even though I continue to feed them.

bear-display

Well true to form, I had an issue. Two weeks ago, I went for my annual mammogram. I am faithful about that test. My mother’s sister, my favorite aunt, had breast cancer and had a double mastectomy at a very early age.

I had a new kind of imaging done that I have never had before. They found something. I got a call back requesting I return for another diagnostic test and then would be required to wait for a consult with a doctor. I knew I had a crazy week and so I waited until the following Friday to return.

The week was worrisome. I finally convinced myself it was just an issue with the imaging as she said she had trouble and needed to take two of the right breast. I did not know that was not the reason, but I clung to the idea she messed up through the week. But true to someone who has PTSD, my body reacted with terrible flares of pain. By Friday, I could hardly walk.

The Elizabeth Wende Breast Center is a fabulous facility here in my town. They have satellite offices and I usually go to one of those. But for this recall, I had to go back to the main center. It was mobbed. You waited in line just to check in. I was told I was going to the other side of the facility and to wait in a separate area. It was smaller and calmer. Once you are in the actual  facility, it is run like a spa. There is soft music and no sound is emitted from the TVs in the waiting rooms. They have couches and soft colors and you feel like you are in someone’s living room. They offer chair messages and paraffin treatments, and you can shop for jewelry while you wait. It is so soothing that the lady next to me wrapped herself up in a blanket and fell asleep.

The technicians are very kind. She allowed me to see the images she took along with the ones from the previous test. Sure enough, there was a mass and there was no denying it. I was sent back to the waiting room and fought back tears. It was a long wait, it seemed.

After a hour and half wait, they brought me back to the doctor’s office and I had to have an ultrasound done. I walked around the room in anticipation of what was next and I noticed the doctor’s multiple diplomas. The doctor’s name was Posy Jane. How could someone with that name give me bad news? She was crisp yet nice and allowed me to watch as she honed in on the darkened spot. She declared it a cyst and said not to worry. I love Dr. Posy Jane S. It was the best news.

I have a real empathy for the women I know who have gone through breast cancer. It was terrifying even though I had a great outcome. And what if it was something? I was glad I had the opportunity to have such state of the art facilities. They have such great new technology out there that must be saving many women’s lives. Early detection is critical.

I am hoping this was my crisis for the year. The garden is still going great and I plan on sitting out there today and read. We will go to the farmer’s market and then I will create a fall dinner with many vegetables and celebrate the beauty of the season. I know I am blessed and dodged a bullet. I am grateful.