adult children of abuse, adult children of alcoholics, aftermath of narcissistic abuse, anxiety, chronic fatigue, chronic illness, chronic pain, Chronic pain and depression, Chronic pain and mental illness, Degenerative bone disease, depression, emotional abuse, emotional healing, emotional wounds, Healing after abuse, mental illness

Chronic Pain and Spiritual Health

Living with chronic pain is difficult emotionally and mentally.

Every aspect of your life is affected and you have to adapt each and every day based on the level of pain. It is difficult for other people to understand. 

Sometimes you have to cancel plans or leave places early. You may need help doing things or walking up the stairs. Fatigue haunts you like a malicious ghost that no one can see but you. It is an invisible illness that can be cruel and make you feel lonely. 

You know that other people have chronic pain also, but you still feel like you are the only one much of the time.

Days spent struggling to do the simplest tasks drain you physically and emotionally. No one can see your pain and it is hard to find any validation for what you are going through. 

Your social circle may have dwindled down to the last few who are willing to be understanding. Some of you are completely isolated from friends and even family has moved on without you. People get tired of hearing someone complain about their invisible illness. 

Some people think you are just trying to get attention.

This is backwards because chronic pain tends to have to opposite effect of getting attention. Many people do not realize this. 

Isolation has its own negative effects on your psychological state. Depression falls down over you like a dark cloud. There are days when you just stay in bed because the pain is too great….both emotionally and physically.

Chronic pain can be caused by all kinds of things.

Arthritis, fibromyalgia, spinal problems, diseases, and chronic illnesses. Pain can be mostly localized to certain parts of the body, or change locations from day to day. The mental pain is always a part of living with chronic pain….possible the worst part. 

Finding connection with other people can be difficult, but it is important for you not to feel alone. Feeling isolated and alienated for a continues period of time will wear on you and drain you. Your soul needs to heal and you need to feel special. 

Old emotional wounds can be triggered by depression and anxiety.

Feeling alone with pain can bring up emotional flashbacks from your past. Many people with chronic pain have some kind of ghosts from their past that haunt them. The feeling of being invalidated may be something you also felt in your childhood. 

The inner child that was not heard is now left alone and invalidated again.

Being alone with the emotional wounds feels like torment. Since you feel that people are already tired of hearing you express your feeling about your physical pain, you may be hesitant to talk about old emotional wounds with anyone. 

You struggle to survive each day, and you may push those emotional wounds deep down inside you. The pain will get worse from doing this, but it is hard to find any other way to survive.

Pain gets worse with depression, and depression gets worse with pain. 

You are more than your chronic pain condition.

You are not your body and you are not your thoughts. You are so much more than those things. The world has a way of confusing us about who we really are. 

You may not feel like it, because your life feels like it revolves around it. You had other plans for your life than living this way.

The unfairness of this can make you feel hopeless and question your purpose for living. You feel limited in the amount of things you can do for others. 

But you are worth as much as everyone else. It is the soul and spirit of you that has innate value.

Your value is not based of what you can or cannot do. The uniqueness of your mind, heart are limitless.

We can be broken and bruised, but we are resilient. Your resilience comes from your higher self… the self that does not live in the body and is not limited to the physical self.

Love is an unstoppable force of energy that exists all around you. You are surrounded by invisible energies that are yours to draw from Self love is an important step to emotional and mental healing. 

death of a loved one, dying, dying loved one, hospice, hospice care, life

What is Hospice and What Can I do to Support the Care of my Dying Loved One?

I have worked with hospice patients for many years. I have worked with some really compassionate care givers and some that should  seriously change jobs. 

There seems to be a lot of confusion about the work hospice, even amongst healthcare workers. Many people think that Hospice is the name of an organization. That is not correct. Other people think that is it the name of a benefit given by the government and that is a  little closer to the truth, but also not correct.

Hospice is a philosophy of care that believes is comfort care of the dying.

Whether or not someone gets hospice care depends on a variety of factors. One of the terms that you will hear, if your loved one is receiving hospice care is palliative care.

Palliative care is the type of care that the hospice philosophy is based on. This is ensuring the dignity, comfort and pain management of a dying person.

Most insurance, including medicare covers hospice care if you qualify.

This is all tied up in a bureaucratic mess and sometimes it works and sometimes it fails. I have seen people qualify for hospice care and then “live too long: past the expected time. Then their benefits were pulled and they no longer had hospice care.

Sometimes they re-qualify after a waiting period, and the doctor gives a new diagnosis and submits it ti hospice. I believe that the family has to go through the entire application process again.

Sadly I have seen people die without hospice care, even though they had it a month ago, because the paperwork did not go through in time to re-qualify them.

So, that is the aggravating part to me. There seems to be no rhyme or reason to some of the particular cases I have seen, I have noticed, however, that people with private insurance get treated better than people on medicaid. Surprise , surprise!

The idea of hospice care to keep the patient as comfortable as possible in every way.

Each patient that is approved for hospice will get certain supplies provided to them including but not limited to, a special bed with an air mattress that is designed to prevent pressure ulcers, an oxygen concentrator, a wheelchair, and basic cleaning and hygiene supplies.

Each case is assigned a hospice nurse to supervise the care.

The nurse will visit the patient intermittently and if the family requests her to. The nurse will supervise the nursing assistants who are the direct hands-on care for the patient.

Medications are prescribed by the doctor and overseen by the hospice nurse. If the patient is in a facility then the charge nurse is given directions by hospice on the medications to be given.

The usual medications available to a hospice patient are Roxanol, Morphine and Atropine.

Roxanol is given for anxiety and calming. All patients do not need this but the family can request it. Morphine is used for pain and most patients are given this as they get near the stage of active death and during active death. The family can request or deny the morphine, but usually it is standard.

Many patients develop a death rattle near the last few days prior to death.

The death rattle is caused by extra secretions of fluids and it sounds like they have fluid in their lungs and throat. This sound is often very disconcerting if you have never heard it before. I may make you feel like the patient is suffering or drowning.

But the death rattle does not hurt the patient or cause them nearly as much discomfort as it will sound like to you. The atropine does usually work to reduce the secretions and make the death rattle less disturbing to the family.

Each hospice patient is assigned nurse aides. How often they come depends again on your insurance, if the patient is home or in a facility, and also how close to death they are. Usually there is a nurse aid around the clock for patients that are in the last stage called active death.

Active death usually lasts for 3 days to a week, By this time the patient has stopped eating and has greatly reduced or stopped fluids. They are usually placed on oxygen for their comfort.

The nurse aid should be tending to changing their diaper and also turning them in the bed to a different position, every two hours. 

The turning and repositioning of a person that is bed ridden is very critical.

Pressure sores, also known as bedsores or pressure ulcers can develop in a matter of less than two hours of any pressure being on the same spot of skin.

The pressure sores usually occur on the bony parts of the body, where the most pressure is causes. Places like the backs of the heals, the elbows, and the bony areas of the spine are the most common areas for sores to happen.

Pressure sores can get very severe and their are 4 stages to them. They should be prevented but if they occur then they should be tended to in order for them not to turn into stage 2 or stage 3 ulcers.

Here is a link about pressure sores and the four stages. 

This is a link to more information about causes and treatment of pressure sores.

If left unattended, pressure sores will become so deep that the bone is exposed. As you can imagine this is extremely painful to person who is lying on the sore.

Once a pressure sore begins then the nurse to evaluate it, after an aide usually reports seeing it. The patient will be re-positioned more often and in the way that is directed by the nurse.

If a sore appears on the back of the heal, then the heals will be elevated on a pillow, but good aides know that it is best to do this before any sores happen. The pillow should be placed under the lower legs, leaving the heals in a “free floating” position in the air, and not touching anything.

If the sore is on the spine, then there are special ways that the hospice aide is trained to use pillows to position the person so that they are never lying directly on the sore.

Someone with a bed sore should NEVER be laid in a position that the sore is touching the bed, unless they are being changed or rolled into a new position.

There are also topical creams, patches and antiseptics that can be used to treat the area, depending on the directions given by the nurse, or a wound care specialist.

These are some of the aspects of care that are part of hospice. There are other things that are usually done in order to care for the whole person, including their emotional and mental aspects. There are also more things involved in the physical care, but I think I have given you a good basic idea here.

I will write a second post about hospice care and explain about other aspects of hospice care. The best thing you can do as a family member, about their physical care is to learn about hospice care to make sure that your loved one is receiving the proper care.

If they are in a facility like a nursing home, the more vigilant you are, the better care your loved one will receive.

This may be sad, but I can tell you that it is true, from years of working in nursing homes. I have been instructed before to spend more time on a certain patient because the family is expected to visit. 

Being the person that I am, I always gave equal care to all of my patients, but the directors and charge nurses are more concerned with the how the patient’s care looks to the families that are visiting the most, or the most likely to visit that day. People who had someone visiting them every day, always received the best care and the most attention.

If you cannot visit, then phone calls can also help. You can also send a friend who lives in the area to stop by. As long as the facility knows that someone is keeping an eye on them, then your loved one will be more likely to be cared for on a proper schedule at a nursing home.

Once there is an around the clock aide, when your loved one is near or in active death, then someone will be there to care for them all the time. 

This is a difficult journey for you, if you have a loved one who is dying. Hospice also usually offers help for you in dealing with the grieving process. If you need help, please ask them what services are available to you. 

anxiety, anxiety disorder, bipolar disorder, depression, life, mental health, mental health blog, mental illness, mental illness blog, self isolating, social anxiety

Self-Isolating in Mental Illness, Chronic Illness, Chronic Pain, Invisible Illness

Invisible suffering..Invisible illness…Invisible pain…Chronic illness….Mental suffering…Domestic abuse…Mental abuse..Narcissistic Victim Abuse Syndrome…PTSD…Chronic Pain…

These are things that concern me because the people who are enduring these things are not getting enough support. The lack of people supporting  you…or even believing you …causes retraumatization.

There is the initial trauma of the illness, pain, or abuse and then there is a whole new kind of painful suffering caused by what happens next.

People do not see your suffering and so..

…they do not believe you at all..

…they do not believe that it is that bad..

…they think you can just “shake it off”…

…they do not believe that you cannot do the things that they can easily do.

…they think you are lazy…

…they think you are a big baby…

..they  think you should have gotten better by now..

…they forget that you “still have” that invisible illness…

…they get tired of hearing the same things…

..they lose patience with you..

…you do not want to tell people..

…you lose friends…

..You self isolate…

Yes, that is often what ends up happening.  That is one of the reasons that people with invisible illness and invisible suffering turn to the world of blogging.  We have to be able to talk and to connect with someone.

The only people who really understand are people who have been through it or are going through it.

The isolating process can begin with other people giving up on you, getting tired of you, or not wanting to listen to you anymore. You lose one ot two friends and family members. The you are afraid to lose the rest of them. 

You do not actively go out and seek new people because you fear the pain of rejection from them. “Why should you put yourself through this again”….is what your brain is saying.

The isolating can begin with ourselves, because it is too much effort or too painful to interact with other people, especially if they do not believe or understand what we are going through.

The retraumatization can be severe. When people just simply do not believe you or think you are exaggerating, that is one of the worst things you can go through.

Then, of course,  there are people who are predators, and they prey on the weak ones, who are desperate for understanding and companionship. If you have been set up and abused, because of your invisible condition, then it is very difficult to trust people again…or to trust your own judgement of who is safe and who is not.

We can also be retraumatized by bad therapists, counselors and insensitive doctors and nurses. I have heard horror stories of what people have gone through at treatment facilities, rehab facilities and emergency rooms. I have also experienced insensitive therapists and healthcare workers.

So where does this leave us? In pain…suffering…in need of human compassion…and isolated…

Some people physically isolate themselves in their homes. Other people build walls up around themselves and self isolate by disconnecting from other humans emotionally.

We can be around people all day long, yet be completely alone.

Some people cannot leave their house or apartment.

Other people just leave the house to go to work, and do necessary errands, and then self isolate themselves in their house, the rest of the time. This would be me…

When you have reached your limit of being traumatized and re-traumatized, then your mammalian instinct of self protection is going to kick in. Your brain wants to protect itself from any more trauma and abuse.

At some point, the world appears to be a dark and dangerous place to interact with people in, when you are suffering from an invisible enemy. No one can see your enemy and therefore it feels like you are fighting alone.

You energy is going into fighting against your invisible illness, mental illness, or trauma from abuse. You do not have a whole lot of energy left for reaching out to people who might end up hurting you. You do not have a lot of energy to explain and re-explain to people about your invisible illness.

You do not have energy to make new friends, knowing that at some point you have to explain to them about your invisible enemy. There is no guarantee they will understand you or stick around once they find out, anyway.

Your energy is focused on survival. Your little bit of energy that is left, is focused on just getting through one day at a time. Relationships take time and energy and after a while it can seem like there simply is not enough energy to go around.

I do not have any simple answer for this problem. I wanted to at least validate the people who are nodding their heads up and down, as they are reading this.

You are not alone, in being alone. You may be alone in your house at this moment, feeling isolated and different than everyone else. But there are other people who feel the same way.

The isolating is a normal reaction to being traumatized, suffering mental wounds and suffering pain of any kind. It is an instinct to survive be separating from potential danger.

It is also an instinct to preserve whatever energy is left, in order to use to heal and survive.

If there is any approach to this problem that could work, it would lie in the matter of balance. We have to constantly balance the various aspects of our lives. 

We cannot have the same amount of energy every day. Some days we feel better than other days. On our better days, we can try to reach out a little bit. Go somewhere with people or call someone on the phone. Text someone or send and email. Whatever is in your comfort zone for that particular day.

There will be days when interacting with others is impossible. But some days we might be able to reach out, just a little bit. Do what you can and take advantage of any days that are kind of good.

Who you should reach out to and talk to, depends on what is good for you. Some of you have friends that you can all on the phone. Some people would be able to go out to a place where there are strangers and interact a little bit with them.

On good days, I can go to places like a museum or a farmers market and interact with people that I see.

Another way to get some compassionate human interaction, is to do some volunteer work. Nursing homes will often let you come and visit. You may have to set things up, to be a volunteer ahead of time. The people you visit at places like this, will not judge you in the same ways that you are afraid of your friends or family judging you.

Animals are also great. Pets are good companions. As you know, if you read my blog, I get great joy and comfort from my bunny. I also like to go to places with a animals.  There is a place called Sun High Orchard, near my house. They have bunnies and sheep that you can pet and feed.

Sometimes you can go to speciality stores where the people will talk with you. Some places like that would be: comic book stores, craft stores, tattoo parlors, hobby shops and book stores. Any place where people gather, that have a similar interest.

It is okay. Sometimes we need to self isolate for a while to heal our brains. But if the isolation is becoming a problem for you, then do a little bit of interacting on the good days and just rest in bed on the harder days. Balance is the key to most problems in life.

We are supportive of each other here and WordPress has been a blessing for me. I love hearing from the people that follow my blog and I consider the interactions meaningful.

Blessings to all,

Annie

damn yankees, death, life, news, terminal illness

New cancer Breakthrough and a Story About my Uncle

tw-sign6 trigger warning

Please be advised that this post has to do with cancer and the death of a loved one. If this may be triggering  to you at all, please do not read it. This is not about something that just happened to me or anything like that. If it has any possibility of upsetting you, please skip this post.

New research at Stanford University is promising that they have found a new cancer fighting weapon. They are manufacturing laboratory-engineered antibodies that look work to hunt down and destroy cancers in the body.

The new research is based on the way that our bodies naturally tend to reject organ transplants by identifying the organ as a foreign body and attacking it.

You can read more here. I hope that the governments will be helpful in financing this project. It is hard to say about these things. But here is the link, if you are interested.

A new study has suggested an antibody injection could ‘wipe out cancer’ by rooting out and eradicating both primary tumours and distant metastases, where the cancer has spread to other parts of the body.   Daily Mail.com

 http://www.dailymail.co.uk/health/article-3062418/New-injection-wipe-cancer-Antibodies-root-obliterate-tumours-say-scientists.html

Read more: http://www.dailymail.co.uk/health/article-3062418/New-injection-wipe-cancer-Antibodies-root-obliterate-tumours-say-scientists.html#ixzz3ZKnWfSjX
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My uncle died of a brain tumor in his 40’s. It was the first death of a close person, that I experienced. In the midst of living in mentally abusive situations, divorces, and being drug from one house to another, my uncle was about the only stable family member that I had.

I was in my 20’s and in college at the time. I was devastated, when he died, even though we all knew it was coming. He originally found out he was sick, when he began having trouble with his vision

 I remember that he went to the eye doctor for blurred vision and the optometrist immediately told my aunt to take him right over to the neurologist. He must have suspected something wrong in his brain.

The neurologist did scans and told my aunt and uncle that my uncle had a malignant brain tumor. It was operable in a way, but the operation was going to cause damage to other parts of the brain,

They decided to do the operation and he ended up with walking and speech problems.  They gave him 6 months to live but he lived for a year and a half. I remember him speaking with me and it was so difficult for him to put his words together.

My grandmother told me that he must love me very much to make the effort to have a conversation with me. Apparently he had not been talking to anyone very much because it was too hard for him.  She was very surprised that he had kept struggling through to talk to me for about 15 minutes.

I remember struggling to keep the tears back as I watched him struggle for his words. The speech center of his brain had been damaged by the surgery.

I still miss him and often wonder what life would be like for me, if he were still around. He would have loved my kids and probably spoiled them. 

My aunt and uncle loved kids but they could not have any. They used to book the entire summer, when their nieces and nephews were off from school.  They had a different kid staying with them, for a couple weeks a piece, all summer. Their house always had a kid or 2 in it. My uncle liked it that way.

My visit was always special to my uncle. I remember him being excited for my visit. He would take my aunt and I to a play or a musical each summer. I saw the musical Damn Yankees with them. I still love that musical. The song “You’ve Gotta Have Heart” still reminds me of my uncle.

Below is the 1958 movie version of the musical Damn Yankees

He knew I loved that song. After the musical, I did nothing but sing that song all week. It was many years later, and my uncle was very sick with the cancer, but he remembered that I loved that song. He mailed me a cassette recording of the songs from Damn Yankees and copied  the lyrics to that particular song for me.

Sometimes when I am feeling discouraged, I still sing that song to myself. I know that it why my uncle sent it to me was his way of still being there for me, since he knew he would not be here.

I also loved the song “Whatever Lola Wants” from that musical. I always thought it was very sexy. I used to sing that one too. I imagine it was funny to my uncle to hear a 12 year old singing that song.

Below  is from the 1958 movie version. Whatever Lola Wants. In this scene Lola, who has been hired by the devil, is trying to lure the main character with her feminine wiles. But he is very devoted to his wife and she is not having any luck, even with her sexiest moves.

The one below is from a Bob Fosse interview about his choreography of the musical.

This cancer article made me think of my uncle. I still think of him from time to time, even though he died when I was about 23 and now I am 49.

I also still remember how exciting it was to see that musical. I had never seen a musical before and I have loved them ever since.

Here is one more great song from the musical.  This is called The Game. The players are discussing all of the things they have to give up during game season. It is a very funny song about how they have to give up women and drinking for the season.

adult children of alcoholics, alzheimers disease, mental abuse, mental health, mental illness

Lack of Compassion for Depressed Nursing Home Residents

Something happened at work that really offended and upset me. It is so disgusting that nurses, doctors and other people in the health field are so insensitive and uneducated about mental illness. Health care should be about the whole person and not just their physical body.

We have a resident that lives in this particular facility who suffers from moderate to severe depression , that fluctuates from time to time. Sometimes she is very depressed. When she is in  that downward spiral , she tends to stay in bed. She will still eat if food is brought to her room, but  she does not want to go out to the big dining room and interact with people.

Being an introverted person myself, I can attest to the fact that it is very traumatic, triggering, and extremely anxiety provoking to have to be in a room full of people when you are is a state of depression. You simply cannot do it.

Forcing yourself to go out amongst people who will not understand your mood, is not a good thing to do to your brain. All those people having small talk and asking you “how are you” is like a torture chamber.

So, this sweet little old lady was in a very depressed state today. We will call her Nora. So, i went in to visit Nora at 4pm, when I began my shift.   I could see that she still had her pajamas on and had not been out of bed all day. This is a clear sign that she had spiraled down into a depression state.

She said that she did not feel well and that she did not feel up to coming out to the big room for dinner. I went over the dinner menu with her and together we decided that she would eat scrambled eggs and toast in her room. I then left the room to place her order with the kitchen and requested a tray be brought to her room. The kitchen was no problem.

Then I went back to Nora’s room to let her know that the tray had been ordered. As I opened the door to the room, I saw that my supervisor (the charge nurse) was in the room, speaking with Nora. The supervisor said to me that Nora would have to have a “Sick Tray”.

I learned today that  Sick Tray is a tray that they give to people who have a stomach virus and are too sick to eat a real meal. It is to keep them from vomiting up all of their dinner. You know when you have a tummy sickness, you don’t want to eat .

The Sick Tray consists of hot tea, gingerale  jello, and toast . It is not something that you are supposed to force on someone. It is mainly to make sure that they have something offered to them, even if they say they do not want to eat at all. What it is not , is something to be used to withhold food from someone.

Yes, that is what I said. Withhold food! So sick, isn’t  it ??

This nurse said to me the following, “Nora is not sick. She does this all the time. She is JUST depressed. She is saying she is sick but she is not.  If she is going to stay in bed sick then she gets a Sick Tray.”

I asked her if there was any physical reason Nora could not have the scrambled eggs and toast that she wanted.

The nurse said “NO. But she does this all the time that she refuses to get out of bed. If she is going to fake being sick just because she does not feel like coming out, then she can just have a Sick Tray”

This is punishment. This is a clear punishment of someone because they have a mental health issue. This punishment is unfair and will cause the depression to get worse. Poor Nora was hungry and did want to to eat. She asked for the eggs and there was absolutely no reason she could not have them.

The supervisor was so disgusted by Nora’s continued pattern of depression ans self isolation that she decided to punish her by actually making her go hungry.

I was so upset and angry but there was nothing I could do. i did go back in to the room late in the shift. I won’t say weather ot not I snuck her in a snack. What is your guess? (wink, wink )

But what if I had not been there? This will happen again and again. To make her go hungry and to treat her with such disrespect, is detrimental to her mental health. It further isolates her.

She was willing to have me visit her in the room. The right thing to do would have been to bring her whatever she wanted from te kitchen and for me to sit with her while she ate. Then I could spend some time to talk with her about how she was feeling and she would have at least had a dinner she enjoyed.

What else can I say? I have hundreds of stories like this. I have collected them for 5 years. There is little or o compassion for people with mental illness in these facilities.

There are a lot of elderly people in nursing homes that have severe depression due to the many losses they have experienced. They have lost their home, their spouse, their car, their drivers license, their pets and many of their friends and family have passed away.

it is a very hard time of life and many people end up depressed and isolated, when they become old This is a horrible failure of the health care system and a lack of compassion from health care workers.

More awareness and re-training of the nurses is needed, if people are going to have lives worth living in the long term care facilities.

Blessings,

Annie