IMPORTANT INFORMATION!

Emotional and Physical Recovery Are Two Different Issues

Jeffrey Kreutzer and Victoria Powell,
The National Resource Center for Traumatic Injury,
Virginia Commonwealth Model Systems of Care
One of the most important things to understand is that recovery can be divided up into at least two categories, physical and emotional,

Physical recovery means getting the body to work right again. Physical recovery is the biggest focus of most rehabilitation programs, especially hospital-based brain injury programs. When people talk about physical recovery, you may hear them saying things

“He wants his headaches to go away.”
“I’m tired all the time. I can’t work for more than 30 minutes without taking a break.”
“He wants his coordination to come back so he can play the piano at church again.”
“She’d like the ringing in her ears to stop.”
“He wants the dizziness to go away so he can jog again.”

On the other hand, the injured person and their family members are often emotionally affected by the injury. When talking about their emotions, you may hear people say things like …

“Since the accident, everyone in the family has been worried and upset.” Or Neglectful. “I’m emotionally drained. I’ll settle for just one good day.”
“We’ve done everything we can to help her. I’m not sure our lives will ever be the same.”
“His older sister cries all the time and I’m afraid she’s going to fail in school. On the other hand, his younger brother acts as if nothing has changed.”

Each person will be affected differently, and each will have a different rate of emotional recovery. Emotional recovery means feeling good about yourself and your life. When people have trouble with emotional recovery, you may also hear them saying things like …

“I wish our lives could be back to normal.”
“He wants to feel like his life means something.”
“She wants to feel like she’s as good as everyone else.”
“She wants to have a reason to get up in the morning.”
“He’d like to feel good about himself.”
“I wish someone would listen to me and not make false assumptions” . Including Family and Friends.”

Here are some things that you should know about physical and emotional recovery. Knowing more about each one can help you do better and feel better.

Physical recovery is usually faster than emotional recovery. In fact, many people don’t have noticeable physical problems 6 or 12 months after their injury.

Though family members have not had a physical injury, most will feel some emotional pain. How and when each person shows emotions differs greatly. One family member might seem to sleep “all the time,” while another may have problems sleeping. One might be jumpy and argue with everyone, while another may be quiet and stay by herself. One family member might be upset for two months and then feel fine. Another may show no reaction for two months and then suddenly start crying a lot and report feeling hopeless.

Emotional recovery for the patient and family members can take a very long time, five or ten years or longer.   As far as myself, 17 years later, the emotional trauma is not resolved. This is concerning to my doctors and they have asked lately if I needed more counseling to help in resolution.  But, I understand (researched based) if there is no support by those I love, no way of speaking what I’m feeling, not allowing myself to let my voice be heard, will ALWAYS hinder my recovery.  I also understand, that the damage to the brain is severe enough, it CAN heal, but the old Cathy is gone.  That took years to come to acceptance…alone.  I had excellent counselors and I was asked a few years ago to go through a program from home and worked with two wonderful TBI counsellers.  I liked it and it gave me more coping skills.  I slowly trusted them and let my real thoughts be known.  It’s not that my thoughts are bad, but most aren’t interested in knowing how it really feels to not be you anymore.  The frustrations, the embarrassments, the insecurity (my son often says he misses his confident mom), but I second guess myself constantly.  That wasn’t something I did a lot…I might think things over a while, but to constantly be second-guessing myself make me very frustrated and angry.  I second guess myself because of being misunderstood.  I try to be very open to people because I’m hoping if I say or do something, they will come to me and validate what they THOUGHT I said or what my actions felt like.  Many times I have no clue that is what was said, and it makes me feel so terrible.  I know I have said things I would normally not say.  This is called TBI.  It is called Alzheimers or Dementia for some.  But TBI, it seems, is not an acceptable reason.  So one clams up in their shell.  Then people think I’m upset.  Sometimes I wonder if it’s possible to get through the day and not have someone judge what I’m thinking or saying WITHOUT asking me.

More serious physical problems can mean more serious emotional problems.
Getting better physically or emotionally isn’t necessarily a smooth process. Sometimes people stop getting better for a time (plateau) and then make progress again. Sometimes people take one step back for every two steps forward.

New problems and stresses can affect emotional recovery. These may include the illness of another family member and problems at work or school.
Most people have a pretty good understanding of their physical problems and what they need to get better.

Many people have trouble thinking about and talking about their feelings. Try to understand your feelings and talk to others you trust about them. Doing so can help you feel better about your life and your recovery.  (This includes all family members, but having respect when speaking.  And this means allowing the patient to speak without telling them what they are feeling, doing and why.  If there is no listening, then there is no trust.  If expressions of wanting to speak to clear or air opinions, or to “let it out” to continue healing for everyone, then the patient gets time to talk and someone must be protecting their ability to have that time, and to keep others from taking over and not listening.  Patients soon learn, when they are not allowed to speak THEIR OWN thoughts, then they shut down.  Recovery is slower, or health gets worse.  Research has proven this over and over, yet it is not something that is talked about with the family at any doctors appointments.  CLT) 

**This article was written by staff of the Virginia TBI Model System and the National Resource Center for Traumatic Brain Injury (NRC). Our mission is to provide practical information for professionals, persons with brain injury, and family members. For more information about our educational and clinical programs and publication, catalog check our website (www.neuro.pmr.vcu.edu) – or call Mary Beth King at 804-828-9055 or toll free at 1-866-296-6904.

Survivors and their family members may also be interested in our family education and support program at Virginia Commonwealth University Medical Center. The VCU TBI Model System Family Support Program was designed to address the needs of survivors, their family members, and other persons close to the survivor. Participants in the program learn about what to expect after brain injury and important skills for adjusting and extending the recovery process. For more information about the program, please contact Taryn Dezfulian by phone at 804-828-3701, or by email at tdezfulian@mcvh-vcu. 

Their U-Tubes are excellent and here are a few below.
For your interest: Chronic Pain Education for Patients, Family and Friends (Facebook)
chatcat76.wordpress.com
The best website for TBI is  http://www.brainline.org.  It has great video’s and info for patients, families and physicians. You can find others there.

This is very important, as it addresses brain injury, along with Parkinson’s, Dementia and Alzheimer’s.  Although I have done other research regarding these problems, it makes sense to me.  Otherwise, you may have to look up other studies to understand.


		

Being in Pain Means You Are Crazy !

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By using a pain pump, eventually, the idea is to get off of all oral narcotics and other pain relievers.  This is done GRADUALLY!  As the medications are tapered down, the morphine in the pump is increased until the goal is met.  Many needing high dosages of controlled substances like this idea as little gets into the system. The morphine drips into the spinal fluid, getting to the nerve pathways.  Very little is needed in contrast to medications taken by mouth.  Each month, the pump is filled (painless for me).  If an increase is needed, then it’s done at that time.  A bolus can be given about 5 times per 24 hours, via a wireless small box the patient places over the pump and presses a button.  This pump gives many a much better life!  Be EDUCATED and have a doctor who is knowledgeable about pumps.  My views and experiences are mine and may or may not be the views of other users.  Experiences differ, and my experience is rare.
GENERAL SIZE OF A PAIN PUMP BY MEDTRONICS
GENERAL SIZE OF A PAIN PUMP BY MEDTRONICS

 

 

 

 

In my journey of twelve years of severe pain and TBI (traumatic brain injury/concussion) that may never resolve, I’ve come across physicians who have never questioned if I’m “wrong”. Surely I am the expert of my body, and would know if I’m in pain! Most of these doctors also included my husband in all visits, which is smart on two accounts. One, the divorce rate for couples is up to 75%, and engaging the spouse, keeps communication open. Smart! Number two, is the one in pain is often not aware of their actions, or sleep habits, and what medications help more than others, and many other aspects of their life. Including the spouse, or another who knows the patient well, has not only helped doctors make better diagnoses, but it actually gives the patient more freedom from pain. Or at least a shot at it!

My husband was a major player in all doctors visits. They talked to me, and then they asked things I wouldn’t know about…. how does she sleep? Does she toss and turn? Do the tremors become worse at night? What do you notice when the pain becomes worse? What medications do you think works best? And eventually, “what do you think we need to do with the meds to help her get relief”?

Did I get upset because some questions were not directed to me? Absolutely NOT! I found it hard to communicate and came with lists I had kept between each appointment. I tried to be organized, but some things, I wasn’t able to remember or process. I NEVER felt I was commiting some sin, because of being the unlucky person who was on the freeway at the wrong time. And it was a great help in our relationship as husband and wife to be treated as a team, and work as a team.

Sure, we kissed a lot of “frogs”, but found a few Prince’s of physicians!

Fast forward to the 12th year of pain. Unbelievable pain. Pain that kept me from enjoying time with family, and grandchildren. We’ll skip the emotional pain of attitudes from friends and family that weren’t supportive, and turned away in our deepest need. We all know it comes with the territory, not making any excuses, of course.

Being on high dosages of Morphine, and other pain meds, my weight went sky high, and so did the pain! By the end of 2012, I was no longer a functioning member of our family. Isolated, rarely seeing faces, and my husband was not a team member anymore. Why should he come to all the visits – I could get there easily, and he didn’t seem to be important. In fact, I’m not sure why I went to the visits since it seemed I took up time that was already strapped, and the attitude of “GUILTY until proven INNOCENT” was the attitude.

I brought pictures of my family; my darling grandchildren. They were ‘oouuu and awww-ed” over, and an interest was taken over each one. After a quick rundown, I made my point…. THIS was MY family, and yet, I was not involved. I missed so many opportunities, and no longer was willing for this lifestyle. A pain pump had been researched and discussed with others, and I felt it was time. Surprisingly, so did the Pain Specialist. That was probably the last good judgment call that was made for a long time.

First, I was to be weaned from all Morphine. What? Did he not understand PAIN? He quoted some scripture, which was nice, and something about prayer. Okay…. so if I had enough faith and enough “pull” from above, I could do this. I DO believe that those in pain, MUST rely on a higher power, or we would find it hard to make it this far. I read his bio again and researched him, and it appears he changed from his previous specialty to Pain Management, as he had his own personal pain, and prayer was his cure. Oh, why didn’t I think about this before choosing him?

I doubt I have to tell much more of my story, er, nightmare! He was firm…. morphine has to be very low or stopped before the trial. My husband knew this was NOT going to work, so he was very careful in monitoring things. I lived in pain, rarely leaving the house in December. So much for the holidays!  I lied. I wanted to have at least 10% of life. I wasn’t off of Morphine, because I knew it was impossible, and this doctor has no clue about the reality of pain. (more to this story!) In fact, I was shocked at his naivety of a pain patients life.

Another surgeon put in the pump, and things didn’t go very well during recovery. The trial was perfect and so much excitement was in the air. Nothing was felt from the pain pump. I was bruised on every portion of my abdomen, but so what, I’d had surgery. I grew out of the band that is worn for the first couple of weeks. My stomach was large, yet no evidence of infection. Finally, I saw my Pain Doctor again, to have another increase in the pump, and he said it was a hematoma on the pump area that was making the abdomen large. Whew! Soon it would be better.  And another hematoma at the base of my spine.  (Whatever for?)

Except… no pain relief. My husband was not going to watch me roll around on the living room floor (literally), so he began giving me small dosages of morphine, along with the other medications. It didn’t help. I went from a .5 to a 5 in pump dosages in about 10 weeks. Emails were written almost weekly begging for help. I was no longer cognitive, and couldn’t think to even try to explain what was happening. I could answer “NO” when asked, “have you ever gotten relief”. He kept raising the dosage, but no relief.

Let’s pause here and consider. The booklet that is sent home, (which would also be something the physician would be knowledgeable about), said if the patient is not getting relief, check to see if the catheter is in place. NEVER was that an option, but requesting firmly to see a psychologist was! And just who needed to see a psychologist? Time went on, and a mat was made in our living room, and there I lived, with a bath once a week. Curled up in a ball, a helpless husband doing everything he could think of, yet no response. One day it hit me “I have to die! I can not keep doing this.” I didn’t want to tell my husband, but all I could do is cry and say I didn’t know what was wrong. I feared to stay alone, even though I was afraid to do anything, the feeling was strong. Saying goodbye each morning to my husband was a fearful thing. Many knew of our dilemma, yet we all know the common responses. Truly alone, I approached my husband, as he had gone into his cave – the only way he knew how to deal with this horrific situation. Calling him out of his cave, got action beginning.  Someday that will be his story to write.  I’m sure it’s a sad one.

Where I lived on the floor for 3 months!
Where I lived on the floor for 3 months!

On Saturday, March 17,  I didn’t know if I was having a TIA, but something was happening in my brain. Not able to think correctly wasn’t helping! I was scared. I felt I would die. I had been in so much pain, I had forgotten to pray. I couldn’t read my bible. I could call out and ask for help, but did I really have a relationship? As we all know, churches aren’t the best resource for those in pain. No longer was there effective communication in my extended family. My son would call, and listen or read my emails of not coping and write beautiful emails back.  He was empathic and always there if I needed someone. Three dear friends did what they could, but lived miles away. They came as much as time permitted. My husband was home as much as he could be, making sure food was fixed, and ready to grab. I was no longer a human, just a body in exisitance. Tears were constantly running down my face – it seemed they would never stop.

My husband wrote a poignant email to my pain doctor, begging for help. His reply? Out of town, hang on as best you can and will see you on Monday. Period. May I ask…. would this have been his response is this was HIS mother, loved one, sister? I know the answer… NO, it would not be acceptable. But it was acceptable for another. This was more than I could take in, and the look on my husband’s face – the letdown – is something I’ll never forget.

When answering the phone, the smile went on, and the mask became me. How could I explain I needed help? No one really wanted to know. Those who did, got the real story. Those who were in bad health grieved with me. Mainly, I was just someone with a “a headache”, it seemed. We were having a grandchild’s birthday in our club room, and It took all I had to go for a bit.  Scared, alone, intuition strongly said I was dying.  Sepsis came to mind – who knows why, but that would be a death sentence. Funeral plans were made on a scrap of paper.  I wanted my family.  I wanted their rational help.  Words wouldn’t come. We were drowning.  We asked for a family meeting but was misunderstood.  I could hardly look my husband in the eye, as he finished cleaning up. Crushed.

After 3 months of no relief, seizures, TIA’s, at least one stroke, unable to drive 1/2 mile to the doctor, a new PA came on board. He was concerned. The second week I came, (the day after my husband wrote his poignant email, and when I knew I was dying) he wasn’t going to let it pass. (I credit him with saving my life).  I was past communicating, although I knew our internist was very concerned and had done as much testing as she had available to her. She was concerned about the lack of care coming from my pain specialist.  The Pain Specialist practice was headed up by two well-renowned physicians, and one was called in to do a dye test to see if the catheter was in place. (only 3 months late in asking, instead of 3 weeks!!).

I had become so hypersensitive to touch, that I couldn’t be touched! I could only handle tight (swaddling) clothing. Showers were pins and needles. I couldn’t use the CPAP, as the air going into my nose was too “annoying” and almost painful. Air could NOT touch me anywhere. I couldn’t think one cognitive thought. I was lost in the milky way of space.

Touching my stomach to do the dye test, brought screams to my mouth, and shakes to my body, fear of me falling from the table was a concern. It felt good to be held down, and covering my mouth, I screamed as softly as I could, as the dye was put in. Concern was high, just because of the hypersensitivity. Then it was announced quietly. “The catheter isn’t in at both places”. (Meaning there wasn’t any hematoma’s, but a mass in front and a sack of morphine pressing on my spine in the lower back!)

I held my head and said over and over “I’m not crazy, I’m not crazy”. I wanted to announce to the world. I wanted it on the headlines! I WAS NOT CRAZY! My own pain doctor had little to say.

The other physician, who did the dye test, was merciful on surgery day. Not being able to be touch, I was “out” before moving me from the gurney. He was the only one who was kind, that- I do remember that day.

The Medtronic booklet says a side effect can be something like an inflammatory mass (which I accepted the side effects, but I did NOT expect to be ignored when things begin happening), he scrapped out a type of inflammatory tissue, necrotic (dead) as if I was rejecting the pump. No one has to tell me what could have happened if it went on. I was right… I would have been dead the weekend after St. Patrick’s day if not for a persistent PA.  The color already becoming brown, sepsis beginning. Death, unless one is fortunate, is 24 or so hours later. We went through this with a dear friend, who didn’t make it.

My temp was 99. I don’t bother to explain anymore because I am not believed. When I run a temp of 99, that is a sign of a higher temp. The meds have caused me to be unable to run a temp over 99, and normally anything under  100 is of no concern.

We asked for pictures and my husband was amazed. The Doctor said they completely re-did the surgery, putting the pump in an antibiotic solution, then putting it in a sleeve to protect the tissue against the metal. WHAT? Every video I have seen showed the pump in a sleeve for protection. I consider this MISTAKE NUMBER ONE.  (In my books). The catheters were unsuitable and were replaced.  But reality?  The one in charge of my care was the one I trusted to listen, to be pro-active, and to treat this with the care it deserved.

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Three months of excruciating pain, and Morphine was not allowed and was pressured to be prescribed. (thankfully my husband had extra and did the best he could) Throwing up was the norm. (Seizures? Withdrawals?)  How could this happen? How could a PAIN SPECIALIST not click before making so many adjustments to a pump that was NOT working? How could someone be so caught up in “psychology”,

How can ANYONE miss something so vital as a patient who was dying a slow death?

I wish I could say this was the end of the story. Because “something wasn’t right”, and I only knew it as “deja vu”, my neck muscles were rigid. My teeth felt huge, and I was completely disconnected to my body. It wasn’t a TIA, but WHAT was it? I knew if I mentioned too much, I would definitely be considered crazy. That night something happened that I felt was serious. I felt I needed to go to the ER, yet I was to ill. My little dog, my personal caregiver who never left my side, put her head over my chest/stomach area and held still. Intensely she was still. Not moving or hardly breathing. Then she sniffed the air quickly and her assessment was done! 🙂 She got in my face and looked fearfully at me. I was as scared as she. She never left my side. Finally, because of coincidences, (?), I looked up seizures. I had them before and I am on anti-seizure medication. BINGO! Deja vu! I was having small seizures that couldn’t be seen by my husband but could be felt by me. There were blocks of time I couldn’t account for but had decided it was from the pain. This feeling had been going on for almost a month. Later, I was watching a video I had done and to my surprise….(and horror) I had seizures!  It was noticeable, but I wasn’t aware of them!

Immediately I made an appointment with my Neuro who helped with many of my other issues, including seizures.  I was put in a room with a bed… I was reduced to this. In a mesh bag, that only my little dog could see out, and one couldn’t see her unless they really looked, she quietly sat and watched. She refused to stay at home and howled until I returned. Scratching off paint, trying to get to me. I couldn’t leave her anymore. She is quiet, but she has to be nearby. I had to respect her. I doubt anyone knew, except when I went to the restroom, I quietly said to the bag, “I’m okay, I’m going to potty”. She was quiet, but I wonder what the nurse thought? Maybe she looked closer.

Rosie
My seizure dog.

Finally, feeling safe, and comfortable, I could slowly answer questions. Along with improper weaning of Morphine for someone in extensive pain, diazepam had been STOPPED and Baclofen has been started in it’s place. I asked about weaning, but was told the Baclofen would take it’s place.  (not true, FYI!)

Just for your information, Hell hath no fury than a Russian (I think) PA who has began to understand the trauma imposed by someone who called himself a doctor. (her insinuation, but I can’t remember her exact wording). The more she discovered, her anger grew. The doctor she worked with was on his way out of the country, but she called him. I don’t think I would want to know his reaction to her findings.

In their bed, in another area of the office that is used at night for sleep tests, I lay unable to do much. It was too much to take in. To realize this wasn’t my fault. It had nothing to do with my spiritual life, not my psychological thought process, BUT BECAUSE I had a Pain Specialist who had no business being in the business of helping those in pain. He lacked listening skills. He lacked intuition. He lacked good judgment. And he lacked basic knowledge. I would almost guarantee, he would fail any test in regards to the pain pump. He would have failed because he had no idea what was in the booklet given to all pain patients. His attitude kept me from bringing up the obvious. Something was wrong with ME.

As I began to get better, I began to realize what had occurred during the past 4 months. All I could do was cry. The hopeless feeling was huge, and where was I to go and get the help I needed. As it has been said many times before, people in pain may not have real severe emotional issues because they have worked through them. But, because of not being believed, mental and emotional issues arise that otherwise would have never presented itself. So there… now my doctor is correct. Maybe I do need a psych!

My drawings became angry, my journals became angry. Not at him, but for what he caused. For what he brought up in our family, the things I really didn’t want to know was there. For the things that were shown of “friends”, and their life and happiness caused them to be too busy to give an hour to a struggling family. I didn’t want to know these things – even though I already did. My anger hadn’t got around to him. It will, and it is beginning. It will start with a long letter and education.

I have had other physicians, friends, and family beg me to sue. I have good cause, that wouldn’t be hard to prove. But where would that get me? Would it make me feel better? Would it help malpractice rates go down? Would it really change his thinking? Doubtful. He would say “oh, this patient was mentally unstable, but I did the best I could.”

I’ll take another route. I’ll take the highway. Not one of ignoring him (as he tried to do to me), but of educating him. Of getting rid of the “everyone’s happy” feeling he thinks pain patients life is about because we don’t tell everything. Because of doctors like him. I’m asked a lot about doctors. Because of where I worked, and experience, and my experience with pain. He is added to the small list of ones to stay away from. The few I talk to his patients were interesting. Women weren’t doing too well. Men were doing great. Never dismiss what research says.

How did I get through all of this? I’m not completely sure yet. I know God was with me because no one else was. Desperately needing to know, I asked for a sign, and it was granted. I did have some friends who went the extra 20-30 miles to come help.  I was fortunate to have a PA who “got it”.

Those on Linked In, were sure I wasn’t “mindful”.  Their judgment became too much. And they don’t even know me. I was given good resources from others (healthcare givers) and found the alternative help I hope to use. Ultimately, (as some requested) I had to listen to my body. To realize I KNEW what was happening. To stop and let my body tell me what was going on. To keep the outside voices out. To watch my little dog, who knew more than those with an education. Then, to think about my team, and who would help me. The pieces came together, and the “mystery” solved.

The anger directed by the PA at the office of  the Neuro, at such a horrible lack of care, was very validating. Especially, when a flash of anger in her eyes, and my thoughts were verbalized “you could have died”. I thought it was a crazy thought. A dramatic thought. In reality, my body knew it was a realistic thought. I often wonder if I had been with another physician who asked “what do you think is wrong”, would I have known the answer? I think so. Because I had read the booklet. But I had bought into “something was wrong with me, my psyche”.

When teaching at a well-known hospital before the accident forced retirement, that was something we taught to nurses and to patients. LISTEN TO THE EXPERT! Who is the expert? The expert is the one it is happening too! The PhD or MD is basically worthless unless the true expert has a say. If the little things were heard, and thought about, and more probing was done, and maybe even asking the 2nd expert, my husband, proper treatment would have been started, with proper medication, and a happy ending might have been the ending after one month of the original surgery. Especially if a “minor” thing, such as a sleeve, had been put on the pump! All the little “minors”, become “majors”. But, life goes on in their world. Unless it was someone they loved.

The Bounce Blog made a statement about resiliency that has stuck with me:

“Resiliency research has shown that being able to provide meaning to adversity is an essential part of being able to bounce back. This usually involves finding a positive aspect, some silver lining to a crisis. Maybe a new opportunity arises in one area of your life when a bad thing happens in another. Or maybe the crisis begins to make sense later when you get a bigger picture of the time frame in which it occurred.

(I am creating a blog post with part of this again.  RESILIENCY.  Using studies, research and general information, I understand TRAUMA and am not ashamed of how it has affected me. With that knowledge, it gave me the power to do my part in healing and allow God to handle the rest.  If we don’t understand the body and its cause and effect, then we will blame ourselves (and accept blame when it is not appropriate).

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It’s going to be hard to find a silver lining here. How do we make any sense at all of a senseless act? Maybe we don’t right now.
It’s part of our human tendency to chew on things for a bit before we figure them out.
It’s okay to not be able to figure this out yet. It’s hard because we so want to understand, we want it to make sense. Our brains are struggling with this contradictory data that it has encountered.”

Showered, Dressed! A days accomplishment!
Showered, Dressed! A days accomplishment.

My feelings exactly. Time.   Time to think. Time to grieve. Time to heal, not only our hearts, but those who were with us. Then, time to let go. There is nothing “crazy” about this.

And Rosie was promoted with a formal note from a doctor! A Service Dog!  I will write about her later.

PS.  By the end of 2018, I will be able to complete this story.   18 months ago, a doctor said to me “your statue of limitations are up”.  Expressing the trauma and how I could not talk, she simply said: “write it down and send it to the AMA/Texas Medical Board”.  One thing I will say, THEY ARE YOUR FRIEND unless you are harping on something that is beyond anyone’s control.  If you have experienced a mistake (the 3rd leading cause of death in the USA, but un-reporting could make it the 1st) cannot be tolerated.  I have been taken care of…mentally and spiritually.  They have been very kind, gentle and leading with a soft hand.  They understand.  I’m not a “number”, I’m Cathy.  We do have a place who will listen if something has been done that is a terrible crime against us.   I have great respect for those who oversee physicians, and how they handle mistakes that are completely preventable.  Thank you for your continued support.

 

DO YOU NEED A CT SCAN ?

STOP MESSING WITH CT SCANS THAT DON’T TELL THE WHOLE STORY WHEN THERE IS SOMETHING BETTER…

Sometimes it’s very frustrating, isn’t it?  When there is something better on the market yet we, the patient, aren’t told.  That is why – we, the patient, MUST do our homework, or WE are the ones affected.

Don’t take my work… do some GOOGLE-ING…

Start with CERESCAN (www.cerescan.com).   Read what they have to say.  Take it further and SEE what they are saying after 83,000 brain scans~

Look up their locations.  I’m very fortunate, as there is one located in my large city.   I’ll keep you posted, as I just received the RX for a CT Scan and will send it to them tomorrow.  They take many insurances, including Medicare.  Take a look, scour the site and keep it handy for someone who may need a scan someday.

Hope to have more news in the next month.   If an EEG is needed AGAIN, then I’m going for newer technology… https://imotions.com/neuroscience/   Maybe I won’t have to look into this, but just in case there are some… things are better, we just have to search,

 

The Cancer Cover Up is Uncovered! The Journey of Dr. Burzynski…..This video creates second thoughts about how much are we NOT told. Personally meeting this doctor years ago, he is very passionate about helping others. Truly a doctor who wants to do the right thing, and is willing to fight for it.

Do you ever wish you could ask the doctor questions, but are afraid they would REALLY think you’re crazy?

Are you REALLY sure your questions are being answered correctly?  Are they up to date?  Is there an easier way?

“I wish there was a cure”.  How many times have we said this, yet the secrecy is hard to push through!  What if there was a “cure”?  Do you know that there are cures but because of what we have been told (not the truth), we believe what we know nothing about, yet we can be unwilling to search and see if what we think is FALSE? 

Change is something that is hard to do.  Even if it’s for the best. (or worst).   Think about it… Our lives changed and it took a lot of tears, talking, thinking, validating, and on and on to even begin to think of changing to a new normal!  Unfortunately, change doesn’t come easy – even for doctors.  Just recently, after much money was spent in court, and people not getting the help they could have gotten from a Cancer doctor because he was not allowed to treat cancer.  In fact, he was looking at jail time, losing his license, you name it.  If you aren’t aware of this famous doctor, have a look on YouTube under Dr. Burznski.   He went through so much….license taken away, but he fought.  Everyone did everything to shut him up and shut him down.  WHY?  Because he had a very high cure rate and Pharma did not like it.  Not the other agencies, either. 

This is about CANCER.  But what about other invisible disabilities?  What if there was a cure, not 100%, but a high percentage?  What would you do?  Would you believe me?  Or would you believe your doctor because they are so nice, and say all the right things?  Do you know the grade they graduated with? Do you know what they call a person who graduation from Med School with a D?  A Physician! 

 How do they keep up with things?  Can they reasonably answer there might be a cure, but I’ve just not seen it yet?  Doubtful.  But maybe.  What I have found is we are so wrapped up in what the government says, we are completely blind to thinking outside the box, and needless deaths occur yearly.  Even tho it is estimated that the numbers are much higher, THE USA IS THIRD IN DEATHS FROM ERRORS, DOCTORS MISTAKES, ETC…  (and I’m one – but lived through it).  What is intriguing is I will do just about everything to “get well” ~ (as most of us would)  I understand MY health effects my family and eventually, their health.  Yes, that means many doctors, many tests, but through it all, I found the ONE doctor who is willing for “change”.  “We always do it that way” is not in her vocabulary.  Most of my friends and family do not know (even tho I may mention), I should NOT be alive. Finally, I asked my dear PCP what she thought of me upon seeing me the first time.  She said….between a 1 (dead) and a 10 (healthy), I would have given you a 2.  I think that is on the bad side, don’t you? 

Whatever my family suggested, I did.  My oldest sister looked up things and I would try it…. I was desperate though I did not want to live.  Since this journey brought me to a doctor who heals more percentage wise than other’s, and she has a good reputation, I went.  I now honestly know, if not for her, I would not have reached my 60th birthday.  Nor my 50th.  CHANGE…  You must be willing to doctor shop to choose someone who is willing to do things differently.  Do they know the medications that are typically prescribed for very popular diseases have been proven not to work?  Normally, you will still get them and then suffer from side effects.  But it’s comfortable.  Being comfortable with someone is actually being comfortable with someone who can heal you or kill you.  Harsh, but true.  Been there.  I ache when I see my friends or family suffer when I know it doesn’t have to be that way. 

I’ve learned through the years that the thing that helps is most ignored.  I don’t understand.  Deaths and suffering is worse, yet to get someone to change – to see hope ahead, who can make sure your diagnosis is correct, is comfortable being with a doctor who has no idea what the real cures are. 

First, if you are frustrated, remember, you can lead a horse to water.  And that’s it.  But some horses won’t even get to the water.  Let it go.  You have tried.  Don’t take it personally.  Just love the family and be there for them.  Don’t punish them….they are under a spell that many are breaking out of and are being helped and at times, cured. 

Let it go. Let it go.  Take care of you….. let the guilt go when you can’t help.  You’ve explained, you have educated.  You’ve done your duty, so let it go.

THE CANCER COVER UP

The story of a pioneering biochemist who discovered a unique and proprietary method of successfully treating most cancers. This documentary takes the audience on a near 50-year journey both Dr. Burzynski and his patients have been enduring in order to obtain FDA-approved clinical trials of Antineoplastons. Defying the face of skepticism, legal attacks from state and federal agencies.

Burzynski: Cancer Is Serious Business | Full Documentary | CANCER CURE

https://www.youtube.com/channel/UCLiRbQrj-gBow6VdLajWxaw

HIS JOURNEY.

AMAZON:  https://www.amazon.com/Burzynski-Cancer-Cure-Cover-Up/dp/B01M4GMWL2

Have you learned something from your studies that your doctor didn’t know?  If you mentioned to them, what was their reaction?  If they DID know, what was their reaction?  Examples help!

 

Fibromyalgia…. isn’t just pain! Guest Blog

http://wp.me/p2LTiN-sQ

This is a must read from Melissa.  It is mainly about fibro, but so much more!  

This was helpful to me to put things in perspective again when we have a bad day. If you go to the menu on my blog you will see my grocery list of issues that I need to update today. That’s what I hand to a doctor because I can’t remember it all. Give yourselves a break and she tells well.  Please leave her comment on here so that she could see if it’s helped you and what you think.

You are all welcome to send in a guest blog.  Just make sure that it’s posted under guest blog and it will appear in the right place.

Thanks again Melissa

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I was talking to a friend at gym this weekend and was telling her about how I have to choose my clothing.  She did not know about Allydonia.  She like so many others have no idea what it means to have Fibro.

I don’t expect non-fibromites to “get it”.  They can’t.

Just like I can’t understand what it is like to have Cancer or have lost a family member to that awful disease.

I have seen enough of my friends deal with having it themselves or one of their family members that I understand what the stages mean, what it means to have bone cancer,  the various treatment options & the side-effects that can occur.

If you have read my blog before you are aware that I am not fond of the Fibro commercials on TV. The only good thing is that more people are aware that it exists.

However, so often when someone hears that I have Fibromyalgia their comment is “Oh, I have seen the commercials for that on TV” assuming the solution is so easy.

What a disservice those commercials have done for us living the life with Fibromyalgia. They make it sound that all we experience is pain and with their “drug” the pain goes away.

When I tell someone about my health issues, I say I have Fibromyalgia & only 7 of its “evil sidekicks.”

Ok, I used to say that.  I now am the proud owner of 11 of the “evil sidekicks” (note sarcasm).

No-one really wants to know our long list of symptoms and coexisting conditions.

I can almost guarantee that half of our families do not even know what we have been diagnosed (especially since if you are like me every time I go to the Doctor~I add something to my list).

I am still trying to understand all that Fibromyalgia can encompass.  To start with, I didn’t know there are 3 types of pains.

Fibromyalgia pain itself is divided into 3 types.

Doctor Speak: Hyperalgesia is the medical term for pain amplification in FMS. Our brains appear to take normal pain signals, and turn them up making them more severe than they would normally be.

Fibro Warrior:  If someone “lightly” taps us on the tush as a fun “slap – IT HURTS US!!!

Doctor Speak: Allodynia is believed to be a hypersensitive reaction that may result from the central sensitization.

Fibro Warrior:  It feels like you have the worst sunburn you have experienced all the time. Clothing, touches, the wind – HURTS!!

Doctor Speak: Paresthesia is the sensation of tingling, prickling, or numbness in a person’s skin that has no apparent physical cause.

Fibro Warrior:  It feels like when your leg “falls asleep”.

I have been working on building my Fibro Facebook page and blog to offer informational tabs along with introducing myself to the newest members of my support group.

I started to type my Fibro history and which of the “evil sidekicks”(co-existing conditions) I have been diagnosed realizing that it really doesn’t explain what that means.  In order to have a better understanding one needs to read the long symptom list and associated conditions.

Sounds like an easy task; simply google information on the Fibromyalgia definition, symptoms, co-existing conditions or treatments.

Right?  No.

There are so many lists to choose from; Which list do we go by?  They can be so confusing.

I thought I would make a page that has it all.

One definition described Fibromyalgia as; “a rheumatoid disorder characterized by muscle pain and headaches”.

Wouldn’t that be wonderful if all it meant having was to have muscle pain and headaches?

I chose to use the following definition;

    DEFINITION

“Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, stiffness, and multiple tender points. “Tender points” refers to tenderness that occurs in precise, localized areas, particularly in the neck, spine, shoulders, and hips”.

    SYMPTOMS

There are many  lists available showing as many as 100 symptoms usually including coexisting conditions. I have always found Healingwell.com a very helpful and supportive site.  Below is their list; Highlighted = I have it.  AND I, CATHY, HIGHLIGHTED NOT ONLY HER’S BUT MINE.  SOME WE DONE’T HAVE TOGETHER, BUT WE ARE BUT AVERAGE…. NOT MANY GET BY WITH ONE “SIDE KICK”.

1. PAIN   2. FATIGUE  3. SLEEP DISTURBANCE  4. PARESTHESIA   5. DEPRESSION 6. ANXIETY   7. PERSONALITY CHANGES  8. MOOD SWINGS   9. SUBJECTIVE SWELLING OF EXTREMITIES   10. HEADACHES  11. COGNITIVE FUNCTION PROBLEMS  12. FREQUENT UNUSUAL NIGHTMARES 13. DYSTONIA   14. FREQUENTLY SAYING WRONG WORDS  15. BURNING SENSATIONS   16. LIGHT HEADEDNESS 17. MORNING STIFFNESS   18. EASY BRUISING  19. MILD BUTTERFLY RASH(LUPUS TYPE) 20. NEUROGENIC INFLAMMATION   21. DISEQUILIBRIUM- Vertigo  22. MUSCLE WEAKNESS   23. SCIATICA 24. PHOTOPHOBIA   25. ALTERATION OF TASTE, SMELL and HEARING  26. LOW FREQUENCY, SENSORINEURAL HEARING LOSS 27. DECRESED PAINFUL SOUND THRESHOLD  28. TINNITUS   29. OCCASIONAL EXAGGERATED NYSTAGMUS 30. CHANGES IN VISUAL ACUITY31. INTOLERANCE OF ALCOHOL    32. ENHANCEMENT OF MEDICATION SIDE EFFECTS 33. INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS    34. WEIGHT CHANGES  {inc!)   35. RESTLESS LEGS 36. HEIGHTENED AWARENESS   37. POSSIBLE CARBOHYDRATE INTOLERANCE   38. IRRITABLE BOWEL SYNDROME 39. HEARTBURN 40. SUB-NORMAL TEMPERATURE 41. NIGHT SWEATS  42. SENSITIVE TO TEMPERATURE EXTREMES 43. HEART PALPITATIONS   44. BREATHING DIFFICULTIES   45. HEART MURMUR 46. IMPOTENCE 47. SEVERE PREMENSTRUAL SYNDROME   48. FREQUENT VAGINAL YEAST INFECTIONS   49. MUSCLE SPASM 50. NON-CARDIAC CHEST PAIN   51. PELVIC PAIN  52. ABDOMINAL WALL PAIN   53. DRY EYES AND MOUTH 54. TEMPOROMANDIBULAR JOINT DISORDER  55. RAYNAUD’S- like symptoms   56. CARPAL TUNNEL SYNDROME 57. HAIR LOSS   58. VULVODYNIA   59. PLANTAR ARCH

WOW!  Wait we aren’t done.  Now we need to add conditions that seem to co-exist along with Fibromyalgia.  I call these conditions “the evils sidekicks”.    It isn’t known if Fibro causes these other conditions to develop or if they cause Fibromyalgia. No matter what you have to learn how to manage the symptoms of Fibromyalgia and its “evil sidekicks”.

The Evil Sidekicks

Myofascial Pain Syndrome (MPS)Anxiety DisordersTemporomandibular Joint Syndrome (TMJ) Tinnitis (ringing in the ear may be present) Chronic Fatigue Syndrome (CFS/CFIDS) Irritable Bowel Syndrome (IBS) Interstitial Cystitis Syndrome Carpal Tunnel Syndrome Osteoarthritis Cervical and Low Back Degenerative Diseases Rheumatoid Arthritis (RA) Systemic Lupus Erythematosus (watching at it shows up at times with other virus’s) Ankylosing Spondylitis Hypothyroidism Thoracic Outlet Syndrome Polymyalgia Prolapsed Mitral Valve HIV Infection – Immunodeficiency Syndrome, Xerostomia (dryness of the mouth), Kerotoconjunctivitis Sicca (dryness of eyes) Sjogren’s Syndrome – includes Rheumatoid Arthritis. Raynaud’s Phenomenon Allodynia Polymyositis Ossificans Reflex Sympathetic Dystrophy (RSD) Myofascitis Restless Leg Syndrome Migraines Sleep Apnea, Insomnia, Sleep Maintenance disorderDepression Multiple sclerosis  and mine – Traumatic Brain Damage.

This list is long and I don’t know about you but I don’t have an idea what most of these terms mean. It is my hope that by reading these lists you have learned that Fibromites are like Snowflakes – no two alike. We each have our own ever-changing increasing list of symptoms and side effects.

I will leave this blog with one last list ~ Mine

FIBROMYALGIA

Symptoms                                                     “Evil Sidekicks”
Pain                                                                 Allydonia
Fatigue                                                           Myofascial Pain Syndrome
Muscle Spasms                                             Photophobia
Dry Mouth                                                     General Anxiety Disorder
Hair Loss                                                        Seasonal Anxiety Disorder
Depression                                                    Mild Scoliosis
Anxiety                                                           Degenerative Disc Disease
Subjective swelling of extremities             Sleep Maintenance Disorder
Headache                                                      TMJ
Cognitive Function problems                     ADD
Frequently saying wrong words                Periodontal Disease
Light Headedness                                        IBS
Morning Stiffness                                        Chronic Fatigue Syndrome
Easily Bruising
Sciatica
Weight Changes
Digestive Issues
Subnormal Temp.
Sensitive to Temp. extremes

I am a Fibro Warrior ~ Living Life!

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I beg anyone to please tell us how to go about our business as you do, and how to keep quiet, when we desperately need someone to talk too. When do we shop for groceries?  Or run a vacuum over the house?

 I realize that most do not know death could be the result of some of these things.  And I’m not sure about Melissa, but I’ve been plucked out of terrible things, and never had a family even come in my bedroom and just give comfort.  

Because we won’t talk?  Probably.  

Because we have learned a lesson we didn’t want to learn….no one really cares and you appear to be faking it.  

When you need that kind of support, a husband afraid of losing his wife, writing emails to doctors for help before the family comes.  Smiles go on and after a bit, I have to go back to our condo.  A stroke/TIA.  A doctor mistakes and without a doubt I knew I would never make it a week.  And without a doubt I knew if I said something I would be laughed at.  I wasn’t laughed at, just brushed off.  Same thing.  If we hear of someone who is laughing and not caring for someone who is very needy, we are gasping!  What is the difference?

Once, my dear cousin whom we are very close asked me a very hard question.  He is a caregiver also, and has issues of his own.  “Cathy, why don’t family come together and help any more like when our parents were around”?  And I’m supposed to know the answer?  I’m petrified of old age and who will care for us?  Shoved in a Nursing Home is what I see.  No, I’m not saying this out of anger.  I’ve accepted many things and have “cries” later.  

I am scared of when time comes as it has before, and we were a chore.  I love my family, I didn’t ask for this.  I have shielded them from may things, (mainly so I wouldn’t be hurt again).  Charles has said something like this when he is down, but he can get back up a bit better.  Health makes a difference…..  and when these things turn into PTSD, I love it because I’m not close to God.  God is the only one I’m close too.  This is validation… for your horrible thoughts that come your way.  Don’t let them stay – push them away…. things are always not as bad as we think.  (I heard you laughing!)  I appreciate anything that was done for us.  But to feel completely unloved, unappreciated, and no time for even a sandwich fixed….it is hard when you realize you have given all, yet just a conversation that is mellow and understanding.  

One step at a time…. that’s all we have.  Love those who love you and pray for those who have forgotten you.  Don’t let life make you bitter.  And someday the sadness will hopefully go away.  How many articles have been written on how it is impossible to get family to understand?

I would have done better if not for the TBI.  I’m not trusted (which I can understand).  But I can tell my words or thoughts no longer are important enough to stop and listen.  Maybe I should call it Alzheimer’s.  

At least there is more compassion.  I am very thankful for the wonderful counselor and we should have made our children go. I was a blubbering hand full, so maybe it never crossed her mind.  Tommy and Gloria would come, and Tommy being my brother since I was 2 years old, new me quite well.  He let us talk for hours….. if not for that, we would have been worse.  So kind, so gentle.  My other sis/bro were caring for our parents, and I was trying to go as much as possible to help.  This was not the way we planned!  As a sign said…..

“IF YOU WANT TO MAKE GOD LAUGH, MAKE YOUR OWN PLANS.  We are not in control, but we are under the one who is.

Another day in Cathy's Life (1)

ASSISTANCE FROM INVISIBLE DISABILITIES & RARE DISEASES

http://rarediseaseunited.org/resources

https://invisibledisabilities.org/connect/onlineresources/programs4people/

These programs are for adults and children to help provide access to resources, programs and services.  They are from private and non-profit, including governmet agencies for people living diseases and need help.

Don’t be ashamed….if you are honest – honesty will be given back.  They do a great job and still try, even if you are sure you do not feel you will be accepted.  One never knows. 

This is like any other help…. to give help when things are rough, and you figure out things.  Depending on your situation, depends on the help, how long, and so forth.  We tend to down play our issues, and are surprised when it’s REAL! 

 

 


		

Choose JOY !

REMINDER:  CHOOSE JOY!   

Grocery list:
Get little sticky notes for reminders.


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Dreams…. We bought a 4 bedroom home on some land, already fenced for our kids, and then our grandkids to come.  Someday….laughter again of little lives as they JOYFULLY played in their OWN parents back yard.  The same dreams my children had.  Those plans changed. 

NO ONE ASKED ME.  NO ONE ASKED CHARLES. THERE WAS NO CONSULTING OF ANY OF US.  BUT….. God doesn’t “consult”, we obey and then there is joy.  We raised our two children there….a 3 year old.  The other a newborn of 3 months.  We all began leaving in 18 years.  Two of us against our will because WE THOUGHT IT WAS BAD TIMING.  

That is one of the many things Invisible Disabilities do.  Sometimes the “invisible” APPEARS you are OKAY with it.  YOU chose it.  This was what YOU wanted.  Maybe, but this wasn’t the best timing at all.  Our family grieved, dreams began crashing for those beyond Charles and I.

But as if some miracle happened….we saw the best choice…..  we chose JOY.  

Another day in Cathy's Life (4)My daughter was into photography. In our first apartment near the medical centers doctors was where we landed first.  She practiced on me.  Most of our furniture gone to those who needed it., we went back to the Honeymoon days. I LOVED that apartment.  I was very happy there and the pool was perfect for the exercising. Those working at the complex praised me on- soon I was doing more, and faster.  But soon, realizing we could not rent because of taxes, Charles found a two bed room condo.   Joy and Sorrow.  I loved the new condo.  We were on an adventure on our favorite  side of town.  Many experiences we still cherish there with the young college students, etc….. BUT the day came when we had to chose JOY  first, again.

JOY,   Just get Over Yourself.
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Now, speaking of JOY…. There are others JOY that is directly related to them but the offense wasn’t theirs.  It wasn’t their fault.  But… because they took vows seriously, they decide JOY or BITTERNESS.  

HE CHOSE JOY!

He found the apartment first, then the condo.  It was against what he wanted
also, but he knew our stress depended on our choices as we didn’t have support way out in the suburbs.  Interestingly enough, the few who helped … BELIEVED us.  Many others had UNBELIEF and that is the scar that takes a long time to heal. 

To be in need, desperately, and at times, not knowing if I would make it or not.  And not really anyone to tell.  Yes, it affected our marriage, but we work on that yet can still have joy in our hearts.  This is the man who is my caregiver… the one with the smile.

One rumor:  “he should just leave her…its no life for him.”  VOWS and JOY.
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Some weight gain, hair a fright, rarely able for much, and few to talk too, we answered “fine”.  We, like other “invisibles”, stepped through tulips, as judgment is high if you look to good.  Why don’t you do XYZ?  Why aren’t you going?  Why, Why, Why.  Never asking for the REAL truth, but basking in what appears.  For us?  Tears, laughter, isolation, visitation, ….. Joy and Sorrow.  As a whole – WE CHOOSE GOD AGAIN.  It’s always been the best way.The two of us.

 

 
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CHOOSING JOY DOESN’T MEAN THERE ARE NEVER TEARS.  IT MEANS THROUGH TEARS,  THERE IS JOY.

Have you had friends/family put you in against a corner with no way to answer?  Only because there had been no interest to understand in the beginning.  Of course it hurt.  It feels like there is a lack of love.  It’s all about everyone else that we hardly know and surely can’t get to help them.  But, yes, we are interested.  We just can’t take everything in at times.  Somehow, it always seemed backward to us.  To be concerned about things while death was near at times, yet to “afraid”(?) to ask.  It’s not strange, it’s pretty normal.  But when it is like God intended – friends, family near when things are bad….. I know for a fact it is a comfortable way to go, if “going” was happening. 

Colors of Turners Collage

WHO AM I? LET ME FIGURE IT OUT!

 

Understand who we were.  Then after figuring out who we are, letting go of who we were is a good beginning.  Embracing the NEW us.  Accepting us as a child with lots to learn.  Having the support of family to help. 

Who am I?  We all have labels.

I was an educator in management and loved it. I got this job because of being professional and woking hard even tho I didn’t have the degree that was reqired.  I got it becasue of my “name”.  I was an author, a public speaker.  I loved working with people

I was a mom, love keeping house, having company, etc… and had lots of friends over.

THAT  WAS MY IDENTITY? CATHY CARLILE, Rex and Odessa’s child.  That was a priviledge.  I was married to a great man and had two  cute children.  I was Chip’s mother.  I was Mandy’s mom, I was Chip’s mom,  I was Heidi’s owner (dog), I am Charles wife,   These came with roles that most of the tme I liked.   

 5 months after the accident.  Smiling, yet if only my family knew or believed what I was going through,they would be shocked. I felt obligated to hide it as much as I could. They cared – I think they did, but it was lost on 2001-08-09 001 2001-08-09 002“them”.  They didn’t want to communicate.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Who Who are you now? What can you do and what can you not do.

Accident, March 12,  2001 , 3:15pm            

 TBI  (Traumatic brain injury), Dystonia (PAINFUL), Periphial Neuropathy (legs, feet, arms), (PAINFUL), CHRONIC PAIN, (PAINFUL)

RSD/CRPS (google McGill Scale) (VERY PAINFUL),  Fibromyalgia (PAINFUL), Virus’ that were dormant came back in the neruological area (weakest link?): HHV6 (some call it the “cold sore” virus),  Epstein Barr,  CFS (Chronic Fatigue Syndrome Syndrome.) 

These all cause other effects that are either painful, or inward a concern, outwardly I may or may not show, now speak of except to a few friends who are truly interested. (such as lose of hair, which was an emotional issue (I do not like how I look – it makes me look bigger!) , seizures/TIA’s, skin hypersensitivity, noise overload, cognitive dysfunction often mistaken for Alz. I am tested because of my family history ). I have a dr. who treats successfully. 

2001-08-01 001 2001-08-01 002  My 15 year old daughter still needed me.  I tried to be home when she was home, but now… I could do nothing but lay on the couch.  I
couldn’t understand her, and I hope I taught her how to laugh her way through trials.  And to pray.  Because I wasn’t aware of what I said, and am seeing it in my journals, I most likely ruined that too.  We were also close, and she shared what was on her minda lot of the time.  We went places together and it was fun… yet now it stopped.  It wasn’t her fault, tho children seem to take on that burden.  It was the fault of the 16 year old who was irresponsible.  These are the years I grieve for… as things got worse, she got further from me.  Someday I hope she will come back.

The frustration comes from trying to figure out WHAT I can do, and then realizing I can not do it. It takes all my time instead of the usual quick few minutes.  I have gone through hobbies I like, and have found something – painting, so will try that even tho I’m not a painter! We travel and my husband makes a bed in the car, or we cruise.  There is a pain crisis the first few days, but they are not as bad after 12 years. It is hard to sit at home and I do not process to put things up, even in the kitchen.  I don’t know how to cook, I try, but I’m exhausted and can’t finish.

I wonder if you will believe something so stupid?  How long does it take you to write an email?  Just a quick simple email?  5 minutes?  10 minutes?  20 minutes? (that’s putting way to much in to it).  It takes me many times 1/2 day.  See? I told you that you would NOT believe it. 

Because of this, I FEEL I am in trouble most of the time. Very little positive feedback is given from immediate family, and they have made their feelings known that I create more problems by trying to do things.  “Dad has to clean up after you and other duties, plus work” (sounds like young mom, right? lol)  I do all I can to be a good “patient” and he has told me he appreciates that. 

I have grandchildren and I want some memories I would have normally done, but can’t.  When trying – such as at TG, 2014, we got 3 large condo’s in the Hill Country of Texas.  All the grandchildren stayed with us (except the baby).  I wanted things to be nice – pretty paper plates, little activities to do with the children to teach thankfulness, etc….  I was berated on these things because “it left me tired and everyone was tired”.  All these things were done BEFORE we ever arrived.  I had TG taken away because of not liking my pies and dressing, and a confrontation took place with the question asked my husband “do you like MY pies better or HER’s (mine)?  It became more of an issue than enjoyable, as it was all about food, spices, etc… instead of being together and enjoying who brought what and being thankful.  The kids were not involved much as it wasn’t about memories for them.

I want to change that. I don’t know what my future holds.  The little game of pinning a tail to the turkey with something you were thankful for, was made into a laborious thing by my grand children’s parents. It was “silly and stupid”.  The few I did with the smaller children was something enjoyable.  “It was not called for as it was just more thing for me to worry about”.  I wasn’t worried, I wanted to make sure we could do it through out the days.  And it does teach them little things to be thankful for – family, etc..  it IS Thanksgiving, after all. 

The best day of that TG was when the two older grandchildren and I went to the crafty town and had a blast eating and acting silly – having fun. Then home to act however I was supposed to act, which I haven’t figured out yet.

My husband did speak up once, but he isn’t aware of some conversations I’ve had and the struggle I have of no one understanding TBI and Terrible pain. “Get a hobby, don’t get a hobby, it’s too much trouble for Dad and you”.  I stay confused on what to do around them or what to say.  They want the “old mom back who is confident and has self esteem.”  So do I, but pushing one down isn’t the way it’s done.  I can’t seem to get that across.  Because of some lack of knowledge, there is no knowledge of what is wrong and why things are done the way they are.  Yet, there is a double standard. 

This brings me more grief, more tears, and at times, ready to give up. I love my grandchildren so much and they are the joy of my days.  Whatever I do, I want to do and am willing for the consequences of pain.  They are worth that if it is at all possible.  Sometimes it is not.  ALL young families are busy with their homes, children, work and life.  I do NOT hold them responsible for my  happiness nor doing things that make me happy but they aren’t happy.  All I am asking for is respect and knowlege of what I am fighting and not give advice that is in every book of “WHAT NOT TO DO TO SOMEONE WITH….”  They are growing up, so things will get better.  I did not ask to be this way.  I took care of myself so that I would not be a burden or be someone ill.  This was not planned, and it is a great grief to me.  It is as much (or more) of a grief to me, as it is to them.  The older ones are wanting to help more when they know there is a “test”, etc. Oh, what a privilege for both of us…. the joy of getting closer.  Mine had to stop going to their grandparents – the lack of help was becoming to much.  I wasn’t told that specifically… but I understood what the problem was.  To have children who WANT to do is wonderful… so why squelch that?

 HOME LIFE

We laugh and say “my husband is the wife and I am the husband”. (if you get my meaning) He does a lot, and I do all I can to help. We have help, but it isn’t an easy life for him, as we can not do much as we used to do. I feel bad, although he doesn’t make me feel this way.

Most husbands have some down time…. his is at midnight. It may take me an hour to do one email, or more hours, if it is long. The few things I get done would take someone a couple of minutes – an hour or so. It appears I do nothing, which that’s about right.

Some days, especially after a big weekend (mentally or physically), I am a shell.

We want to communicate, but when he gets home, I end up doing things because I can do them better when he is here, although he doesn’t have to help.

He doesn’t seem able to communicate, and part of this, I’m sure is trauma, lack of support from those in his family that are concerned with other family members and have no idea he is sinking at times. He doesn’t say much, as he’s learned he will get turned down. (I learned that years ago). We have to pay for it, which is fine. I’m thankful we can do that, and I’m thankful we can help others, as that brings a good feeling.

I love to help another in a way I can. (another thing I get in trouble for). Mostly, it is because they are not aware of what I’m doing – it may be more of a support by being there, etc…   That was another big issue at TG…. I go to Florida alot. They were my “adopted family” although he was my older cousin. They were like my parents who had died. Now, he has died, so her and I have a very close “mother/daughter” relationship. This is “misunderstood” as going to help and getting sick again. She is 80, very healthy, but she is grieving, and I do help as much as possible. But we are aware of my limitations. We NEED each other. This is not looked at in this way.

Other pain/chronic illness people need help at times. We see it and know that they may not receive what they need. After waiting, then we ask if we can help. In the pain community, it is usually those who understand, helping those who are in need. Instead of downing us and finding fault, energy could be spent in helping. 10 minutes is like gold when it comes in the form of help. But, I would rather have peace, and a loving family, and that is what I strive for. I believe we could do it IF the family was educated.

Doctors speak of the answers to many questions of illness is support. But a solution is never given, as many are not aware there is NO support and we are not on a doctor’s salary.

YOU CAN GO BACK TO MENU AND SEE THE GROCERY LIST OF WHAT I AM DEALING WITH.

GOALS:

My goal is to keep focused and be a good wife, and a good mother. I do not want to be ruled by my children regarding my life’s goals, as they rarely see me, and when they do, I am happy. I’m happy because I am with them, not because I feel good. Sometimes being happy is confused with feeling better. On bad days, I may sit and do nothing. I struggle to be what I should be, but, I’ve learned I can’t.

Ironically, I have many young mom’s and their kids who beg to come see me (us), and have some that call me Nana too. They seem to think I’m doing fine and have always been kind in complimenting me. This goes a long way in feeling emotionally good.

I understand how necessary this is and although my children may not do all I would do, they still deserve my appreciation and pats on the back for their hard work and trying to make a good family.

I can’t figure out why I seem to be the black sheep. But, I do know that TBI can cause this and we are clueless. Instead of kindly sitting down and letting me know what I’m doing, it’s not common. I do not want bad habits and have asked them to help me.

I wish we could have the very close family we were…. they still talk to us, but there isn’t much interest in what we are going through. While that is normal to an extent – parents don’t tell their kids everything, as the child needs a parent they can go to without feeling they are being a burden for advice. It’s a difficult decision…. when do you involve them? I suppose when they are interested.Grandkids and Poppa

The  MAIN Patriarch with his two coming up behind him and that a voice.  If less criticism was spoken and more encouragement given, then there would be no sacrifice given that was in vain.  We never realize what our parents did to help us, yet we can’t be held accountable if it wasn’t wisely used.  Now grown, there is enough wisdom in this family to have helpful family meetings.
Some how, we have a very critical family and this is a lack of wanting to understand and have knowledge.  If they ever saw the man who gave so much, sit with his head bowed in distress, knowing he can’t ask those he thought he could….. it is an abomination to not only watch, but to understand this is not “honoring your parents”.  I don’t deserve this, it has been clear, but there is one how does.  This man expects nothing, and gets what he expects. We come in second, and we are trying to make peace with that.  Our worry is if I died, the grief felt can never be telt. The grief is uncomprehendable and hope it is something that others never have to bear.  All because of me.  My lacks can’t be tolerated, and it affects everyone.  I feel wonderful about that!   

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Teach others, especially if is in invisible. Help them understand. Advocacy is what that’s called and I love it. It’s not about me, it’s about others who are in silence. To make aware of those around each of us who may need us. It is beautiful to see a whole family become an advocate and join hands as one. And it’s sad when this doesn’t happen, and the person is putting on an act that will leave her crying because of emotions.

I do advocacy.  I can’t stand to see another suffer, no matter how small or not.  Pain is Pain.  ‘IN SUFFERING, AN ADVOCATE IS BORN’.  There is a lot of talking directly to the White House, as shocked as I can be.  10 are read a day by the president.  A petition was sent off and it appears we have a chance to change something’s.  I wrote (as much as I could) of my story with video’s etc…. and it was used to teach all in the pain clinics office and all doctors, PA, etc….  I was humbled.  Change comes slowly, but if you can get to the top (Linked In) etc… then you will make changes faster.  I’m shocked when I get one of the doctors who want to link in with me.  WOW…..  maybe it’s working.

I just finished a survey, one that already has shocked a few doctors.  They don’t ask the questions correctly, and if you don’t have an “expert” (someone with the problem who knows first hand), then a convention or any function is not complete.  I was shocked when folks agreed with me.

When doctors saw one in 15 thought about suicide and some thought and almost cried and some cried… WHY?    No support (the feeling of no one cares).  The hopelessness of knowing this is your life.  It’s not like a diagnosis that all understand and will take turns helping.  It’s the worst suffering just like Cancer, but there are no visits.  For a while, I had one person bringing food, one person driving 3 hours RT once a week to help, and someone who worked and when she could, would being things and visit before work.  I fired them.  Yes, you heard me right – I fired them.  They were working themselves to the bone, my needs were great.  Although a lot of hit did help Charles.  But we couldn’t stand to have them be the ones that sacrificed so much, even their health, to help us and drive so far.  We lied.  We said we were fine and could do it.  My friend knew I was lying, but she came less than once a week.

“Everyone is fighting a battle, but most of the time you wouldn’t know it”.  How true.  To think that at times you have sat beside someone who is so ill, they can’t imagine going on.  Sometimes sitting beside someone who has no use for living and made phone calls, and no one home, or to busy.  We do NOT want your attention.  We want your time when you have it because YOU WANT TO GIVE IT.  It’s so wonderful when someone comes and irons two shirts that are tee shirts (well, I forgot to get them out of the dryer quick enough).  Those two shirts have been hanging for weeks – or many months.  There is no time.  There is no strength.

We choose to be happy or choose to be unhappy.  Do it for yourself – Choose what you want, because actually I discovered that no one realizes what has happened.  Don’t disappoint yourself. 

You loose a lot.  Not weight – most of the time.  You lose relationships.  Every kind of a relationship, you lose.  Period.  Doctors do all these studies and have all these ideas that are laughable at times.  But they THINK they are asking the right people, but people don’t always trust, so they are very careful what they say.  I’m careful if I’m filling out something.  Most of those studies are not from the heart…. you can tell.  Some are, and they are wonderful.  I’ll tell you a secret…. if  you know someone with ANY kind of chronic illness – pain, etc… brings loneliness.  I guarantee, they have thought of taking their life, but family has stopped them when they think about it.  I guarantee they feel they are not loved, but tolerated.  Rarely do we hear – you are so exceptional, I know you aren’t feeling well, but you  do things that I can’t imagine.   (that is better than any pill).  Our life is boring.  Boring breeds more “boring”.  No matter what – their marriage is facing difficulties that will never be spoken.  Unless they are the 75% that get divorced.  They feel their spiritual life is gone down the tubes.  They are just a bump on a log. And churches are the worst place to get help.  That’s another sad point.

HOW in this world did they get this idea?  You, my friends and relatives.  My studies show that almost 1/2 of emotional trauma (and we are full of it) comes from doctors and staff.  The other almost 1/2 of emotional trauma comes from relatives and friends.  The TWO important groups of people in our life.  WHY?  We are not allowed to talk, no one believes us.  I have written about this in other places because it goes both ways.  Studies show that when one is able to talk about the trauma, it is greatly lessened.  NO ONE WANTS TO TALK and we don’t want to spend money to talk.  After something bad has happened, and the attitudes that are shown, soon trauma begins.  If it’s not taken are of, then the trauma is almost impossible to get past.  It takes lots and lots of help. 

With this, I’ll say….. IT ANGER’S ME TO REALIZE YEARS AGO IF I HAD SOMEONE TO TALK TO, AND IF MY FAMILY WOULD’VE SHOW AN INTEREST TO UNDERSTAND WHY I DID WHAT I DID, AND ACCEPT ME AS ME AND NOT ‘BROKEN’….. MY TRAUMA WOULD BE SO MUCH LESS.  I can talk about some of it, but the deep deep stuff…. has only great tears.  Tears are still good, so have a good cry. 

The last breakdown I had (which is common in others) left me with seizures back again.  Crying caused them to come back along with other things.  Someday I will explode.  I’ll apologize up front for the mess.

How do you feel about this?  Have you had great support and been able to focus on healing not on household issues?  Have you done something to make things better?  Tell us your story here on PM’s…. they are great to know.   We all have friends… we just don’t know who they are!

 

 

 

 

 

 

 

 

ASSUMPTIONS IN LIFE

 

 

ASSUMPTIONS IN LIFE  Puprle - Chronic Pain Advocacy

(or ASS-SUMT-SHUNS IN LIFE)

Looking back over these 16+ years of misery (in my terms) and learning (in God’s terms)…. I wonder how I have ever made it. And I wonder how I can keep making it.  Only through heaven and all the help that has come down, have I been able to  “it”. We heard this at a conference and it’s truer than one thinks.

 “FAKE IT  ‘TIL YOU MAKE IT”. 

Cathy 2001-05-18  (2)31
42 years old – had HOPE

I never thought at age 42 I would be disabled.  Considered by others as a TYPE AAA personality.  Never would I contemplate ever having anything worse than the flu.

Some put guns to their heads (and they have to research that – we could have saved them LOTS of time and money!) – that’s why CPRS is called the “suicide pain” at times. Some are surrounded by love, and those who care, and they go on and are willing to live a life that is as full as one can have.  Some are surrounded by – nothing.  They have passed the time of “being sick”.  And some have sick friends AND sick family.  Friends who didn’t know what to say (I’m sorry, what do I need to do to help you is plenty), still live in the recesses of their minds.  Friends who assume we are faking, we are not doing what we should be to get well, and those who assume we just aren’t interested anymore.  Why?  Because we have good days and bad.  Mostly bad.  They ask us to go somewhere, or to visit, to meet them at our favorite place.  We can’t get dressed, or hardly move.  Our brains are too full, and no more noise is allowed.  Our emotions are overflowing, and we know we will cry – and who wants to be around a cry baby??  So we excuse ourselves “maybe another time, I’m sorry”.  After a few tries, disgust is seen and heard and we are dropped from the list.  After all, we were seen out to eat or at a store yesterday.  Why didn’t we save that strength for today?  Because it doesn’t work that way.  Each day, we are given our day.  Whether it be bad or good.  If it is good, we take advantage and get out.  Rarely does it coincide with others plans, or even our own wishes.  +

I was surprised the other day at the doctors office, (which got me to thinking about this)…. The PA said, after filling my pain pump, something about “what has this taken away”?    What?  I asked what she meant?  She said again – clearly aware until now, that giving 30 minutes of time was the ultimate of to much! (smile) Maybe she wasn’t aware she was to be in and out quickly, not concerned with the psyche of her patients.

Hummmm….. This was going to be interesting to think of all the things I had tried not to think about.  All the things I had cried about, been depressed about…. until a huge seizure would not allow me to cry for a long while.  Crying was causing seizures.  Don’t ask… talk to a Neuro! 🙂 

WHAT DID I LOSE ?
1.  ME !  The ME I was used to, the confident me when in a sticky situation, the ME who could makes supper and pies for my family.  The ME who loved to bake.  The ME who could put food on the table with little notice for 20 people.  The ME who could drive a car past 3 miles.  (how about a few states with my children on summer when hubby had a big project)?  What about the ME who could talk, and actually most of the time- people understood what I was saying.  Or write and make sense.  The ME who didn’t put their foot in their mouth 89 times a day.  And never know it.

2.  The ME that met friends for lunch, who KNEW I had met them for lunch a few minutes afterwards.  And could relate what we had said.

3. The ME that lost their two children, but actually gained two more.  I didn’t lose – I WON four kids for the price of two!  WOW!!  Now, they are older with grandchildren.  They are busy, but most mothers (ME) can GO to them and help.  I’m one of those who sits and needs help.  This makes me angry.  Someday, I hope they will come back to me…. because I miss them, especially  my daughter.  My son drops by and we see them at times for lunch.   Gaging by FB, and my experience with my mother when she lived nearby, how many times does a daughter see her mom?  

 

I got homesick by 5 weeks when they moved.  But when living in town, we met around twice a week.  An hour or so out of my day, was worth it.  In fact, a while after we were married I told my husband on his mom’s birthday, he should be taking her out – alone.  It would be special for a mother to be with her son, alone. Doesn’t take a rocket scientist.  I knew that would be special to her.  All mothers are different and her focus is on her children.  When the kids ask one, they expect the other.  And I the same with mine.  A difference in raising…. a matter of “gaining” not “losing”.  But I respect that….   

I sit on the back burner.  I understand, that’s my place right now. It’s not their fault about my health and it’s not my fault they had 7 children (but I’m glad!) but at least humor me!  If I had a mother/daughter day once in 6 months or a year, I would be happy.  I don’t react anymore.  I understand about kids and promises.  

I’m not the overbearing kind who expects my children to make me happy.  My dear Daughter in law used to come bring Alexis for lunch –  but she needed to work.  I miss her terribly. And I also understand.  My DIL never knew me when I was ME.  She met me just a while after my accident.  My son brought her over and I knew immediately – “SHE BELONGED IN OUR FAMILY”.   I’ll brag a bit, but she’s got a good job, and she’s a good mom and wife and she is my “daughter”.  Merika & Nana

I was able to be with my daughter for her first child.  As a childbirth counsellor, I knew what to do to make things easier on both of us. But my the time #3 came along, I was much worse and her FB page of being heartbroken spoke for myself, too.

7 Grandkids
#8 Grandchild  Was born today! Feb.27, 2016. Saw him 1 wk later

4.  I miss the ME who could visit family.  No visiting, no closeness.  I’m sure they are suffering just as much, as they have disabilities also.

5.  I  miss the ME with the dreams.  Dreams that were doable.  I miss the ME that was a wife.  Now, I’m a boarder.  My husband has to cook, has to check to see if the ice cream was put up.  When I can’t find my cell, he knows to say “check in the refrig”.  I put things down when looking around.  I miss our life growing older together.  It’s not anything like I thought it would be. 

DSCN3504

Because Chronic Illness and TBI DESTROYS life. (I didn’t say this, many doctor’s have – but I agree!)  No one believes us.  That is why there are many closed sites for us to discuss the things we wish for, the things that bother us, etc… because no one else can comprehend.  It’s impossible.  I know… I was healthy at one time.

DSCN3488 (2)

6.  I miss the ME who didn’t have to wait until I could talk/comprehend/speak all intelligently in order to make a call.  THIS DRIVES ME CRAZY.  Sometimes my husband will tell me what I said that I was clueless about.  ULG. 

Once I watch a video I did – a type of documentary.  (now I wish I could find it)  I was looking at it again and in HORROR watched as I had a “silent seizure” and melt afterwards. Thankfully, I don’t think I ever posted that one.   I began to read slowly about the senator who was shot… head injuf

7.  I wish I  could have a dog.  I DO have a dog, but she isn’t a real dog…. she is a SERVICE DOG. How many times do I hear “I wish I had a Service Dog”.  DO YOU NOT GET IT?  If you had a Service Dog, you would be feeling miserable.  Do you have brains?  Never mind, don’t answer.  I am thankful for ROSIE, but I wish ROSIE was just a DOG, not one I had to constantly be on the ball… training, keeping her trained to have better manners than any child!  (which might be easier!)  rosieAnd did anyone tell you – NO SERVICE DOG is to be touched, spoken too, or acknowledged in ANY WAY?  I didn’t think so.

A dear friend wrote me a note and talked about “ME”.  Someday I’ll post it… it’s very encouraging.  We put on an act, it’s not easy -after all, do you hear everything about someone who is ill?  Of course…. but they know it’s not the rest of their life. 

That is what is hard…..  how can you tell someone how you are doing when you aren’t sure?  You aren’t like you were, but there are plenty of things going on.  I doubt they would want to hear I lost it last night…. I wanted to die…. I felt like a burden…..  No, we don’t have anything interesting to here.  And that’s fine.  Just acknowledge that I’m here.

Something I find very things very humorous – I know every ailment on my husbands side of the family (but I can’t remember).  We are kept up by his mother.  Which is honestly very nice.  The irony is…. she knows very little about me.  I’m not sure why she doesn’t ask.  Why doesn’t she sit like she does to others, is explain what happened, why, what and how come.  She needs to talk about her accident she had.  Because that’s part of healing.  I was shocked to hear her argue (that’s her way of conversing, we take no offense) that I was NOT hit 3 times, but just once.  OH…. I forgot.  It sure felt like 3, and it was written down as 3, and the car showed 3, how silly of me.  She never asked.  It was a little family joke, (to keep my husband laughing, as I thought she would be more supportive of him) but when she called, and then asked “How is Cathy?”, sometimes he got to 8 SECONDS!   It is impossible to tell a story of this kind in seconds at a time.  But why ask him?  I’m sitting there to at times, in the car, at the table, with nothing to say because the conversation isn’t anything I know about – people I’ve never met (and sometimes my husband hasn’t).  But that comes with age. 

Mom is Crazy

I’ve got to write that down in my book of “HOW TO DRIVE YOUR CHILDREN CRAZY” or ‘HOW TO BE A GOOD ELDERLY PARENT”.   My son quietly reminds me that HE is most likely the one to pick the nursing home for me! lol.

I do research.  The kind doctors don’t do….  they could by simply asking their patients but obviously that hasn’t ever been discovered or researched.  I’m saddened by what I see and hear.  I’m not surprised and it’s what I expect.  But why is an Invisible Illness thought of worse than some disease?  When I mention to my doctors on occasion what I’ve discovered, (which doesn’t take a rocket scientist), they are shocked.  Yes, your patients don’t tell you a lot.  Because you have not earn their trust.  You have done worse, research shows you have turned their trauma into a big emotional trauma.  What a magician.  We are people.  Your mother, your sister, your brother, your child.  There are ways to help, and congratulations, you have figured out what is needed.  But…. it’s not good unless there is a true solution!   We must figure that out….

Once, (or a gazillion) I went to the doctor and the doctor said…..  “YOU LOOK REALLY GOOD”.  I know…. a whole book was written on this line we hear.  If I was a Dog, my hair would be standing up on my back.  OKAY…. let’s get this straight….

WHAT WERE YOU EXPECTING TO SEE?  Body parts brought in one by one?  Someone who could barely move?  (well, I’ll admit, there are times that you do see this)  INTERNAL means inside.   EXTERNAL:  means outside.  So, if there was an accident or illness – after some time – there are no EXTERNAL signs.  (I’m speaking in general here.)  BUT, you know there are specialist who help us with the INTERNAL complications we are experiencing.  And as you see, we have a team.   That team treats INTERNAL complications that are rarely seen EXTERNALLY. I know people are different, personalities are different, etc….  but one thing I HAVE NOT LOST IS THE ME THAT ALWAYS LOOKED PRESENTABLE BEFORE OTHERS.  You will have to blame my mother for this.  My dad died of complications of Alzheimer’s.  If you didn’t know better, and if you only greeted him, then you would say HE DOES NOT HAVE ALZHEIMER’S.   If he doesn’t have Alzheimer’s, then I don’t have the grocery list of INTERNAL complications.  He was the example of how to have the worst disease and make it funny.  Then he could try to fool you into thinking he was teasing.  Then he learned when to keep his mouth shut.  (I’m still learning)  He looked great, he had a great personality, but he had one of the most dreaded diseases.

It’s a CHOICE.  There are stages of grief, and shame on anyone who is not aware of them somewhat.  We’d keep our feet out of our mouth a lot.  One stage is “talking”.  We must talk to get it straight in our heads.  Yes, it’s not interesting.  But I’m so thankful for those who were kind enough to listen, and listen, and listen some more.  Then thank ME for allowing them to learn what they learned.

 

 

It’s simple:
If I can’t talk and be understood, THEN I DON’T TALK, (I sound more intelligent) .

If I can’t be trusted on the phone, (either I’m depressed and don’t want to bring them down) or for another reason…. I DON’T ANSWER THE PHONE.  (the world hasn’t ended yet).

If someone has asked a question, and I’m unsure how to answer properly, then I try to wait.  (most of the time)

I REFUSE NOT TO SMILE WHEN ANSWERING THE PHONE.  I REFUSE TO NOT GO TO THE STORE IN MY PJ’S OR SOMETHING THAT APPEARS THAT I’VE WORKED A WEEK  A BATH.  I REFUSE NOT TO PUT ON A FRONT AND SAY “FINE” WHEN IN PUBLIC.  NO ONE WANTS TO BE AROUND A WHINNER…. INCLUDING ME… MY KIDS GOT IN TROUBLE FOR THAT!

Those that care, see past this.  They allow you to talk and not give advice when they have not experienced this.  Of course I’m doing good…. I have good days and bad days.  You may not see me on bad days.  I save those days for the doctor! 🙂

“For someone with all you deal with, I am amazed how you are so cheerful, and sound happy. Let’s talk soon and share what is REALLY going on.”   Please meet a good friend who understands, or a doctor who “gets it”.  I’m sure you will be pleased to meet them.

2015-12-29 21.47.39
Hair, hair, nice to see your

PS.  For anyone who doesn’t understand somethings regarding someone who is trying to bury a life that is still alive, maybe this will give you some tips.  It takes a lot of courage to start over – with everything.  Even if you have to ask your husbands middle name!  (which happens to be my sons middle name!)

*****Venting is very different from complaining. When someone is told to STOP COMPLAINING, ultimately, they have just said “STOP GRIEVING”.  If this happens, you have just created a huge trauma in their life.

Someone said “Grief is the loss of ANYTHING of value to that person”

Who are we to decide what is another’s grief and how long it should last? Our job is to support and encourage.  Rarely and surprisingly do those with a chronic illness/disability have the family and friends they love behind them keeping them going.  I am the youngest…. and I had good support that was as possible as it could be.  We we trying to care for aged parents.  Sometimes we would have more, but something has happened to keep it from us.  A LEGIT reason!

We have chosen joy, but sometimes grief comes and must be dealt with….

Have you experienced the same?  

 

Fun – it’s important.