Update – TBI survivor – Moving On

I wanted to let all of you know that I am working again.  I will never again teach as the need to handle multiple things happening at the same time is not possible.  Also, handling multiple conversations is impossible for me. I could no longer handle groups working, helping a kid with work, and answering a call from a parent simultaneously.   I find myself going to a quiet area more and more. I cannot handle noise and sudden sounds like I used to.

So what am I doing? I am a cook at a local home for those in need.  I have explained to the residents there that I am unable to remember all of their names and what they like in their coffee, tea etc.  They are quite understanding and remind me of how many sugars etc. as I take the coffee cart around.  I am doing well with remembering the recipes and cook at breakfast most days I work.  Knowing how to cook and wash dishes was in my memory bank from years and years of having done so therefore I am able to do most tasks as required.

As far as my fatigue I monitor myself and rest as needed.  There are still days where I sleep 10-12 hours to be rested.  I am working on losing the weight I had gained when sedentary ways filled my days following the accident. I am over feeling sorry for myself and need to be as healthy as I can.

In retrospect I look back and see that I tried everything I could to get back to my old profession, but it was impossible to do so.  It took a while for me to accept that.  The disability hearings and paperwork were impossible at this time in history. There are no tests to prove one cannot handle multiple tasks.  I only took tests done one on one or alone.  Distractions were not in the room and so I passed them. They need to come up with a more diverse set of tests to as not discriminate against those of us with a TBI.  I pray that happens in the future but as for me it is too late to get the funds I thought were there for me.  Do not rely on the system. It failed me.

I have learned that life can throw you a curve ball.  Curve balls happen. Some hit you in the face and leave you forever changed.  The old me is gone. She is not coming back.

I used to feel sorry for myself because of that fact. Now, I see that God allowed me to be able to do other things with the set of skills I maintained.  I am now meeting new people who understand me. I am not the only one out there who has lost the old me.  Lives change due to many factors; wars, blindness, diabetes, accidents, fires, mental illnesses, and more.  I see that in the eyes of the people I work to serve daily.  Some of them are still caught in the quagmire of feeling sorry for themselves. A few are asking for help even though they do not really need it, perhaps due to doctors and professionals telling them that they will never be able to do something they loved again. But, for the most part the people I see each day as I take around the coffee cart are like me. They speak of the days when they used to be in a profession they can no longer work in. They speak of lost friendships and how their lives were and how they are now. I glean from them tidbits of growth each day.  I see those who go out and celebrate life in their new form.  I watch as they laugh and play cards and savor life.  It is no longer about the nine to five job or the keeping up with the family next door as it is for some. It is about surviving something from their past and moving on. It is about discovering who we all are now and living joyously as each day is a gift.

If you are a TBI survivor or someone who cares for a survivor know that I admire you.  I look back on the last few years and see that I wasted a lot of time fighting to hold on to who I was and did not explore who I could be.  As a new school year approaches I fight off the temptations to look for an online teaching job as the desire to go back to who I was is there still. But then I brush it off and put on my scrubs and go to work. Bringing joy to those who I cook for is my new goal in life. To bring them a bit of joy makes me happy.  I understand them more than they may know and it seems that most of them understand me.

Friends, stay the course and be thankful for each day.  God bless each and every one of  you.  HUGZ 2 all   Pam

 

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Rose Colored Glasses

Oh, those rose colored glasses – tinted with that blend of colors that darkens the suns and tints even the faces of my grandchildren. Those glasses that I wear that allow me to see into a world that I had not planned on being in. A world always tinted that shade of pink with a hue of brown allows me to work and function in the world of bright fluorescent lighting and sunshine. Without them a torrid of symptoms erupt and can cause migraines and eye fatigue.

Oh, those rose colored glasses are so different from the ones I had heard of long ago. Those glasses that people seem to think help you see the world in a positive light. A light that makes all look well and promising. How untrue, how simplistic a view that so many have.  Yet, for me it is a varied type of reality that my rose colored glasses bring. It is the reality of living with a TBI.

Four years ago I was in a rollover. We had just left my grandson’s baseball game and were headed home when we were t-boned. The details of the accident do not matter much, but the changes in the my life do.  That person in that car is no more. Or maybe, I should say that she does exist and is alive, yet the essence of her being is modified.  Back then I lived a life filled with teaching and traveling when I desired via car or plane.  Driving was a joy even in the busy streets of a city as long as I was bound to a site that I’d enjoy the day.  I loved being able to drive to distant places and relish in the cultures and levities of the locale. Now, I am to drive within a twenty minute from home range as to avoid fatigue etcetera.  I am learning to enjoy the local flavor of life. I have found a few places that I did not know of before, but mostly, I miss being able to go on an adventure to the local state parks and sites that I had grown to love. The one I miss the most is being able to go see my grandchildren.  To be there for their ball games, their concerts, and all that life envelops pains me.  I love seeing the photos on Facebook and being able to live through the pictures but it is not the same.  I have wished for one of those self driving cars. I could travel once again as I had to see the animals at the zoo in Cleveland or the Chihuly glass exhibit in a nearby city.  I could go to the markets and venues of Cleveland and maybe even see a professional ball game with the kids.  I miss being able to travel where I wish. I cannot even fly to locations like I used to as I cannot get to the airport without having a driver.  Those rose colored glasses help but they are not an answer.

Oh, those rose colored glasses that once helped me to believe in the system that would be there for me if I needed them are gone. Those glasses filled my mind with illusions that I would one day be taken care of by my retirement system, The process would not be hard and I would get from the system I had paid into what was due. But now that my new rose colored glasses are from whence I see the world I see that the system does not always work.  For those of us with  TBI the proof of our disability is almost impossible.  Then on top of that to find a doctor that will fill out the paperwork is another task indeed. What you think will be there for you might just be an illusion from that old rose colored mentality. Not all is greener on the other side of the fence. True, I know get the standard retirement I would have. I am thankful for the approximately four tenths I made while working. But you need to also see that gone are the days of a full income. Gone are the days of saving for retirement, but more than that gone are the days of living my dream job.  Gone are the days of building up the increments I will be paid. I am here by happenstance not by choice. In addition to the retirement system the settlement from the car insurance company barely covered my medical bills. There is no big pay off in the books for me. It may be possible for some, but my advice is to NEVER rely on it.

My rose colored glasses have helped me to see so many things. There are many who live in this world who may not have on the physical glasses but see the world in a new way. They are like me in that they had one life, had to let it go, and have moved on.  I am blessed to work in a place (part time) where I see these folks daily.  I now cook part time in a county facility where those who need respite care etcetera come to live. Each day when I serve them I see the faces of those who have put aside the life they once had. Some were engineers, soldiers, professors, and laborers for the good of the people. Yet, now for varied reasons they are a new person. A person who lives a life perhaps not by choice, but by the result of a card they were dealt in their lives; vehicle accidents, illnesses, fires that destroyed their homes and took all of their belongings and more.  Those moments that you see on the movies or in the news that seem out of reach for you. Those things are what effects others, not you. Until they do. Then and there the rose colored glasses begin to take on a new shade and color of their own.

I ask today that you take a look at how you see the world. Are you wearing those optimistic, it will never happen to me glasses or are you wearing the type that I have? Seeing the world through a new hue isn’t a bad thing. It can shape you and mold you to be a new person that has strengths and weaknesses like everyone else.  Change is inevitable.  It will happen. I just pray that the way you see the world is not out of a magical belief that all will be the way you plan it.  Life happens, card are dealt. Rose colored glasses are broken.  I pray you will never wear the glasses that I do. But, if you do know that you are not alone.

 

 

 

 

Daily Prompt: Viable

Daily Prompt: Viable

To be viable means to be capable of surviving or living successfully in a particular environment.  If we consider a plant, the concept is easy to decipher as to whether they need a desert, a forest, or the sea. But, as for people it is a bit more difficult to discern where they are viable or not in varied settings.  I must say that I am most viable in a peaceful environment wherein I feel safe. Being one with PTSD the world can startle me in many ways. It is then that I pull back into my cocoon and attempt to block it all out. For example, one day I had traveled to a little town to look at a dog I was considering to adopt. A large truck turned the corner near me and as it did it hit a light pole and broke it in half. The pole must have impacted the tire as an explosion ensued. I was not far from where this took place and it brought about a reaction from my gut. I sat there in my car trembling unable to focus on what I needed to do. As cars behind me began to blow their horns I had to regain my composure and move on.  Other examples are not as extreme. People who are aggressive and accusatory scare me as well.  The emotion that comes with such behavior impacts me more than most people. If I see someone engage in an argument or accuse someone of something that they may or may not have done I pull back into my shell and retreat. I do not tolerate that environment well.  I do not flourish in any unloving scene. I retreat and want to leave it as soon as possible. Most recently I find myself pulling out of society for the most part. I am happier alone where I know what to expect. I don’t even like to answer the phone depending on who is calling.  If I feel that they might be negative or want to gossip I don’t answer. I seem to want to manipulate my environment in the hopes of being able to grow, survive, be me.  PTSD has changed me in how I live. I now dread certain places I need to go and people who are mean just simply infuriate me. I can barely tolerate them.  In order for me to be viable in this society I need to force myself out of my shell I have built and get out there. I will not be successful if I don’t.  I need to take baby steps and go where I feel safe. Church is one of those places. Being with certain family members is another. Crafting is peaceful and I flourish in my own little zone doing that. I am one when planted in certain areas I shrivel up and would surely die without the proper feeding of love and being given the waters of life.  Viability I have found is not just about plants.  It is about humans as well. I think that many who withdraw cannot tolerate the negativity that is rampant in our society. The media is made up mostly of negative gossip and hatred. Even our t.v. shows upset me and I have to turn them off. I do not flourish in society much anymore. I need a viable setting in which I can live.  I live in my little world and try to keep out the boogie men. I just want to survive in this world.  But it is getting harder every day.

 

Ohio Teachers, Did You Know?

Having been through the process of attempting to get disability for two years now through STRS I thought I would journal some of my experiences, not as to complain, but as to allow others to glean from my experiences with that system. As one who believed the system was there in case I needed itH I must admit that I was more than stunned by the paperwork needs for proof. Not because of the difficulty of the task which appears to be quite simple,  but because of the variety of issues trying to figure out how to get the paperwork done. About two years ago I began to collect paperwork to prove my injury from an accident. At that time I did not even know I had a TBI. I went to a neuro psychologist to take his tests and also went to other doctors for documentation. Being that my primary physician would not complete the paperwork I sought out a new doctor that would. That doctor did fill out the first set of paperwork as he promised and I submitted it. The first round of paperwork was declined. I see now that I did not have enough proof. Yet, I hired an attorney and went to court.  (DO NOT pay up front – we lost $2,500 as I thought that cost was for the entire process and it was not.) We lost. That week I called in to the office to report I had gotten the denial and to ask how we should continue to find that my attorney had left the firm. I had no records of what had transpired in court as I did not pay for it to be typed up. I was more than upset. She had never mentioned to me she was leaving the firm.  Moving on I went to therapies for months at a time etc trying to get my vision returned to normal. It was during this process that I learned I have post traumatic vision syndrome and a TBI. It can be improved through therapy, I was told. The therapy made me ill and I really hated doing it. I went from there to find a neuro ophthalmologist to be told that nothing could be done and that the therapy was a waste of time and money. I needed to accept what was happening. My vision issues were permanent.  But, that doctor who was an MD would not sign the paperwork for disability. You see, I had a signed paper from an eye doctor that is world renowned for her vision therapy techniques but because she was not an MD or DO (which I thought was a doctor of optometry) , her paperwork would be acceptable as additional commentary but without the signature of an MD the paperwork would not even be looked at.  I went to so many MDs trying to get paperwork signed. But, as many of you know a TBI is not easy to prove.  Meanwhile, my attorney had told me that a  new person was taking over my file. He let me know that when I had a doctor that would sign the paperwork he would help. Basically until then I was on my own. I was told that I had the EASY part getting the doctors to sign the form. He gave me no suggestions as who to go to for the form to be signed nor any help at all. He seemed to be one that gathered my paperwork and sat on it while I did the work.  When I attempted to give the firm a bad rating I got a letter in the mail that was not nice. I got scared. Anyway, finding a doctor to sign the paper is not an easy task and will be a topic of another blog. I went to visit STRS when I was almost out of time and the person assisting me explained to me that there are teachers in Ohio that are completely blind and teach. Even if I went totally blind I could not get disability from STRS.  I called senators and congressmen trying to find help. They said it was not their jurisdiction although one did call STRS to state I had called them. ?? Not much help in my eyes.  I ended up not being able to get a doctor to fill out my form so that STRS would review my file a second time. I recently ran out of time and am now waiting on paperwork for standard retirement to process.

 

Those of you who teach in Ohio, I suggest that you not rely on the STRS disability system.  It is not what I thought it was at all.  I have had no income now for over two years. I will not have an income for a month or so even with the standard retirement. When you file for that you cannot work for a few months, even part time. Paperwork takes time. When I tried to work a few hours during the process even the local service to assist those who are disabled told me that I could not work and file as STRS is very picky and will decline an application for anything they can.  I might be able to work a part time job a few days a week but have been unable to do so. You cannot get unemployment during the process either. If you do that you are in fact stating that you can work. You will be denied if you take unemployment.  In addition most all applications are denied the first round. You will need to be seen by the STRS doctors that they assign you to. Some say that they have more clout than the doctors you choose to go to.  I am not one that knows that but can see how it can happen. My suggestion would be to look into a disability rider on your insurance. It would possibly help to pay your bills during the process. People have lost their homes etc. during this process. I also suggest that you spend less out of your pocket for classroom materials. Put that money in the bank. You might need it one day to buy food for your loved ones.  By the way, if you become disabled and do not have enough years in service you may need to wait to get payment from your file. I was told I needed a certain number of years to get retirement at my age or I would need to wait until I turn 60 to get anything. Know the rules. Pay off you house. Pay off your cars. Be ready in case. I am blessed to have a spouse that supported me.  Can you live on one income for years? Are you a single income family?

Ohio teachers, did you know all of this? I will write more when I can. Eyes are tired. I want to let others know what you face in the real world. It is not an easy thing to get. Your life can change permanently at any moment. HUGZ

Cherish :Daily Prompt

via Daily Prompt: Cherish

 

“Cherish is the word I use to describe… all those feelings that I have hiding deep down inside…. ” These lyrics rang in the mind of my younger self.  I loved the words to this song and yet I had just begun to understand the true meaning of them. To cherish back then was to love in a simple way; holding another’s hand or to view a brief kiss of a couple nearby.  Yet, now I see so much more depth and breadth to that simple word.  To cherish now means to hold one’s heart in your hands and in your heart. To be blessed enough to have that person in your life for the long haul no matter what is to be able to cherish them. It is to know that person inside and out and to love when they walk into the room even after forty years of marriage.  Cherish is only one part of the vows I took so long ago – I pledged to love, honor, and cherish the man I love. Those words spoken to be done in any condition even in sickness. In the last few years since the accident that left me unable to work I have watched my spouse take on all of the challenges including the monetary ones without even one word of complaint. In those years I have watched him work hard as he always has asking nothing in return. He has even told me that all will be okay and has encouraged me on so many occasions. I am so blessed to have a man in my life that is so loving and caring. I cherish my time with him. The time home has brought us closer together and allowed me to love him through simple acts such as baking or cooking meals for him. To cherish is to love in a way that nobody else will ever know of. Even if you read this you will never understand the meaning of our love.

As I read posts on Facebook from those who are caregivers I see so much distress in their words. I see their emotions that they wear on their sleeves. I feel for them. Yet. I also feel for their loved ones with the TBI. I wonder if their loved ones read their posts. I wonder how they feel being caught in a world that they did not ask for with someone they cherish complaining about them. To lose one’s self has to be hard enough. To lose one they cherish and live through their opinions and blasphemy has to make it far worse.  My old self is gone. But parts of that old me remain. I am thankful that my love for my spouse remains. I am thankful that he cherishes me enough to not cast his problems on me as I heal.

“Cherish is the word I use to describe… all those feelings that I have hiding deep down inside….” Do you cherish the person you are a caregiver for? if you do then think of how you show that to them in your every day actions.  I am blessed to have my spouse. Are they blessed to have you?

 

 

Proclivity – Daily response

via Daily Prompt: Proclivity

I wish that I could state that my thing I do regularly is blog. But I don’t. I seem to do well for a while and then life and it’s activities grab ahold of me and I am not focused on my writing.  My tendency is to choose other things. I do so many things on a regular basis, but not write. I need to make it a predisposed part of my day.

I have been so busy attempting to fulfill the requirements of the STRS disability  board that my life has been like a ragdoll tossed to the side for near two years now. I just ran out of time with the whole process of getting disability. It seems as if proving ones traumatic brain injury is not easily done. I have been to so many doctors over the course of the last two years and to no avail have not one doctor who was willing to fill out the documentation.  I am left with no money; no pay for over two years now and bills from trying everything I could to get what they asked for.  I feel as if I wasted thousands of dollars in an effort to get something I was due and lost.  I paid into a system that was supposed to be there if I needed it.  But, as for me it was not. I now must accept the lower payout of standard retirement. I will not get any money for a while now as the process will take time. I cannot work as I am disabled – just not on paper for STRS.  I had lived in a world filled with illusions that the money I had put into the fund was there for me if were ever to need it. But, I have found that to get that money back out is not that easy. I wish I had bought disability insurance prior to my accident. My hope is that I will be able to find a part time job that I can do a few days a week for a few dollars. I am not sure I can work in fluorescent lights at all but I think I would like to try.

Perhaps now I can write a bit each day as the paperwork attempt is over. It filled my life and robbed me of so much. I need to move on. HUGZ

 

 

Daily Prompt: Penchant

via Daily Prompt: Penchant

         Okay, I am going to come out and just say it, I had to look up this word to know what it meant. LOL According to the online dictionary it means to have a strong or habitual liking for something or tendency to do something. Well I have a bunch of those.
1. Chocolate – I love chocolate. In fact some might say I am addicted to those little chocolate pieces we call M&Ms.  My kids knew I love those little morsels and avoided eating them. They knew that momma had times where her cravings were too big for her and if they were gone a silent parade of events would occur. First up would be the finding of the keys and some money. Second would be the drive (20 minutes) to town to buy more. Lastly, the overindulgence of chocolate — as by now the craving was more intense than ever. If the purse was empty then a search of the house for anything else chocolate would ensue. Fudgesicles, cookies, you name it, even chocolate chips were in danger of being consumed. Chocolate is an obsession for me. It is my number one go to in times of stress.  I have a penchant for eating chocolate as many do.
2. I have a penchant to fight for what is right. I do not know why this is a part of me, but it is. If I see something I disagree with I do not just do it as some do, I stand up and say something. I must say that this has caused me a lot of stress in my life. My book, Molding Sharon, is an example of this. I wrote it as one who has lived life with the loss of a child due to an abortion. An abortion that neither the father nor I wanted. I wrote the book as a way to process what had happened and it helped me to heal immensely.  Following it’s publication, I was asked to speak in DC at the march and other locations locally. That was all fine. But the ramifications from family were the things that hurt the worst. I have found that even when you stand up for what is right (in your mind) there will be people who oppose your line of thought. Some are nice about it and others not so much. That is their right. After years of fighting for the rights of my special needs kids, asking for clarification in the laws as to be sure someone is not being forced into an abortion, and now the effects of a TBI on oneself and family I have slowed down fighting for what is right. My PTSD flares up easily and the possible threats from those in opposition scare m
e away for the most part. Typing on this site seems safe thus far. I will fight in a new way for what is right. It is a part of me, that part of the old me did not die.
3. I love animals. When I see a puppy or a pet of any kind my world turns into a childhood sea of emotions. I want to run to touch, pet, kiss, and love on them every time. In the past I was the person who had the imaginary sign that only animals could see in my front yard. I imagined it saying in bold print – SUCKER LIVES HERE – GO TO THE DOOR and look lost.  Worked every time. Over the years we have taken in so many strays. Some I kept following a search for the owners. Others I nurtured and set free. The last stray I took in was a little raccoon. He had been bit by a car and was stunned. I fed him with an eye dropper. He was too cute, but oh so messy. I love animals and always will.  It is one of the best things about working the farmer’s markets. I get to see all kinds of dogs there. I even get to pet the Amish horses waiting to pull the buggies home.
4. I loved teaching. It is in the past now but I yet find myself doing things that will help my grandchildren to learn. I buy the  gifts that will foster their creativity or love of sports. I miss teaching for it was a big part of me for over 30 years.
5. I love learning. Why, even today I learned a new word! Life is so full of wonderful things to explore! Why not explore it to the fullest all the while doing as you love. What are your favorite things to do?
 When someone asks you who you are do you answer and say what you do for your profession? Many do.  I have changed that now. I would say that I am one who is a Christian woman, in love with chocolate, animals. children, and learning. I stand up and fight for causes I believe in and love the little guy. I am me. How would you describe yourself? I would love to know.