I cannot seem to summon the brain cells that I need to do the Posting that I wanted to on How the Brain Learns, tho I have all the notes. So, I will talk about something that is visceral and comes from my soul and my heart.
I married when I was 26 years old. Some of my peers married just out of High School, others in College, most of my peers married before, but some after me. I went back to school for my Masters in Occupational Therapy, and what was to become my Life's passion, Pediatric Occupational Therapy. I was 30 when I became pregnant with my daughter, 31 and had been in my only Occupational Therapy job for a little over a year when she was born. After 6 weeks home with her following a C-section, returning to work was the hardest thing I've ever done. I never knew it was possible for such a small person to leave such a big hole in my soul, when I left her. But something else happened. I was exhausted. When I sat down, it was very hard to get back up. Moving forward, thinking, staying on task, all hard. Yes, I had a newborn, yes I was nursing and pumping for a year following her birth, but she was sleeping through the night by 6 weeks (big babies sleep through the night earlier). But then the aching started. Like a flu ache, but if felt like not only was it in my muscles, but also my joints. After a year of this, and talking to Physical Therapy co-workers, I visited my Rheumatologist. He mentioned that I might have Fibromyalgia, also known as "New Mothers Syndrome" because of the disrupted sleep, but I was not officially diagnosed until 1993, when my daughter was three. It was actually on her third birthday.
Fibromyalgia tends to affect Type A personalities. The people who are perfectionists, who over-extend, who can't say, "No." I discovered that saying, "No." was like being an alcoholic. You have to practice it every day. I could keep it up for several years, then I would see a need, people would wear me down. I continued working full-time through 2002. Living in Montana was the outdoor lifestyle we wanted. Cross-country skiing, treks to Chico Hot Springs in the winter. Camping, hiking, biking, walks on the Railway grade turned walking path along the river where we live. I talked my husband, who has severe Arthritis, into walking the 2000 Honolulu Marathon as a Fundraiser for the Arthritis Foundation. We trained for six months, three/four days a week, and finished in 6 hrs. and 47 minutes, me crying as we crossed the finish line.
At work, we moved our Adult and Pediatric Occupational, Physical and Speech Therapy Services to a customized area in the basement of one of the two Hospital Campuses of our merged hospitals here in town. I remember it was Valentine's Day of 2000. The complaints came slowly, reports of headaches and nausea that would afflict the recipient immediately upon entry, and subside upon exit of the building. Increased asthma attacks, illnesses, respiratory ailments. Starting in Feb. 2002, I had chronic Sinus Infections and was on anti-biotics for 3 months. My fatigue increased, I started having bowel irregularities. When I would participate in physical activities or do patient transfers, things that I normally had to work a little at but were no big deal, I would break out in profuse sweating and overheating. By the summer, I was in severe pain in my lower abdomen and back, and was having to take several days off at a time due to severe constipation. I finally saw a Gastro-enterologist who diagnosed pseudo-membranous colitis (colitis from over-use of antibiotics, killing the beneficial bacteria and allowing an overgrowth of C-Deficil). By the time, I filed my Occupational Health Report, in September 2002, linking my symptoms to something in the workplace, 3/4's of the Center's employees had also filed reports, and an Environmental Study had been initiated in March of 2002. By this time, my eyes were often swollen, I had a constantly sore throat with rough voice, headaches, terrible bowel/back pain and I was exhausted, and barely functioning. One of my co-workers in the Pediatric Area had stopped coming into work, her symptoms were so bad, and she was seeing an allergy specialist in a larger town, who wanted to see the three of us who had the worst symptoms. After numerous tests, he ordered all of us to stay out of work for at least two weeks, then six weeks for two of my co-workers as the Allergist found both the physical and emotional work environment toxic. My two co-workers returned to work in an adjacent facility for two months, but found the Administrative relationship untenable and tendered their resignations on Dec. 19th. The Environmental Study did find some air ducts never connected. Soil adjacent to an office and a treatment room that was wet and under a heated sidewalk, unexplained water in a sewer access in a treatment room, and mold in an electrical room. I was never able to return to work and was released from my workplace of 14 years on Dec. 31st, 2002. There-in was my first secret sorrow. Because it was a Work Comp Case, all our Co-workers were ordered not to have any face-to-face or phone contact with us. We had celebrated birthdays, I had two babies at that hospital, countless Christmas Parties and Present Exhanges. We were a family, a community. There were no good-bye parties, no cards, no phone calls to inquire how we were doing, or if there could be help. My office was actually packed up for me, and I am still coming across things I realize that must never have been packed. Because many of my own personal toys and manipulatives were in among the therapy toys, the Center Vice-President accompanied me to the therapy rooms, while I combed through and culled my equipment. At the time I stopped working in September, I was working full time, was Sunday School Superintendent and Teacher, Fibromyalgia Support Group Facilitator, Special Needs Support Group Co-Founder and Facilitator, and High School Youth Group Leader. I gave up all these positions, as I just no longer had the energy.
Once we realized that my two co-workers would no longer be able to work for the hospital, we started hatching plans to have our own practice, two Pediatric OT's and a Speech Therapist. I found a temporary facility, which my husband spent his Christmas Vacation remodeling at no cost to us. We contracted for a new contaminant free facility to be built in a new shopping development in town. My two co-workers started treatment after Christmas. From the beginning, I knew that my illness was more complicated because of my Fibromyalgia and my colitis, etc. I tried to voice my concerns, but quickly got caught up in the euphoria of planning a practice where our Practice Philosophies held strong. Unfortunately, as time, progressed, it became more and more clear, that I was not improving. Although, I came almost daily to help in set-up, license applications, etc. my stamina, endurance and energy levels just were not improving. My pain levels were also increasing. Finally, my co-workers had the Development Real Estate Agent contact me to tell me that if I couldn't commit to start on a certain date, that I needed to pull out of the contract. Although, I suspected this was coming, I felt blindsided and betrayed because my co-workers did not have the guts to discuss it with me themselves. In six months, I lost two jobs, and all my friends, hobbies, and extra-curricular activities. I stopped attending church, because it was too painful to sit so long, and too exhausting to deal with people's well-meant inquiries regarding my health. My husband had great difficulty in understanding what was going on with my health. Initially, we thought it would just be six months to a year, which I could engage in Continuing Education and get back on my feet. I actually sat for and passed Advance Certification in Pediatric Occupational Therapy. A Certificate I was never able to use.
I had to file an appeal for a full 3 months coverage of Workmans Compensation as they only wanted to cover a month and a half. I fought for benefits from my two Long-term Disability Policies for three years before I received benefits. I was ultimately diagnosed with Chronic Fatigue Syndrome brought on by allergies to mold in the workplace. It took me 5 years before I was awarded Social Security, 2 paper appeals and two physical hearings. Because they sent the initial SSI award to my bank account that had been closed for three years, it took an additional year before I received the actual benefits. Because both of my disability policies offset for my receiving SSI, once I started receiving Social Security benefits, I was receiving $8400 dollars/year less than before I started receiving Social Security.
Stopping work was strange. I prayed for somebody to tell me I was too ill to continue. I got that, but the actual symptoms that ultimately interfered with my being able to work, were not what I was initially pulled out of work for. I fought for my health and livelihood. And then all of a sudden, I realized I couldn't do it any more. It was just over. No fanfare, no going away parties, no funerals. I had one friend from work who called and kept in touch, but she hadn't even been my closest co-worker. The parents of my patients were another story however. I still keep in touch with several, and will run into them out in the community. So this is my secret sadness I guess. That I did not get to say good-bye to a life until it was already gone. And my friends... just, disappeared.
And tho I have talked through and mourned, this is still a pang I feel around my heart that I can't seem to let go all the way.
In Peace and Love,
Kismet
I married when I was 26 years old. Some of my peers married just out of High School, others in College, most of my peers married before, but some after me. I went back to school for my Masters in Occupational Therapy, and what was to become my Life's passion, Pediatric Occupational Therapy. I was 30 when I became pregnant with my daughter, 31 and had been in my only Occupational Therapy job for a little over a year when she was born. After 6 weeks home with her following a C-section, returning to work was the hardest thing I've ever done. I never knew it was possible for such a small person to leave such a big hole in my soul, when I left her. But something else happened. I was exhausted. When I sat down, it was very hard to get back up. Moving forward, thinking, staying on task, all hard. Yes, I had a newborn, yes I was nursing and pumping for a year following her birth, but she was sleeping through the night by 6 weeks (big babies sleep through the night earlier). But then the aching started. Like a flu ache, but if felt like not only was it in my muscles, but also my joints. After a year of this, and talking to Physical Therapy co-workers, I visited my Rheumatologist. He mentioned that I might have Fibromyalgia, also known as "New Mothers Syndrome" because of the disrupted sleep, but I was not officially diagnosed until 1993, when my daughter was three. It was actually on her third birthday.
Fibromyalgia tends to affect Type A personalities. The people who are perfectionists, who over-extend, who can't say, "No." I discovered that saying, "No." was like being an alcoholic. You have to practice it every day. I could keep it up for several years, then I would see a need, people would wear me down. I continued working full-time through 2002. Living in Montana was the outdoor lifestyle we wanted. Cross-country skiing, treks to Chico Hot Springs in the winter. Camping, hiking, biking, walks on the Railway grade turned walking path along the river where we live. I talked my husband, who has severe Arthritis, into walking the 2000 Honolulu Marathon as a Fundraiser for the Arthritis Foundation. We trained for six months, three/four days a week, and finished in 6 hrs. and 47 minutes, me crying as we crossed the finish line.
At work, we moved our Adult and Pediatric Occupational, Physical and Speech Therapy Services to a customized area in the basement of one of the two Hospital Campuses of our merged hospitals here in town. I remember it was Valentine's Day of 2000. The complaints came slowly, reports of headaches and nausea that would afflict the recipient immediately upon entry, and subside upon exit of the building. Increased asthma attacks, illnesses, respiratory ailments. Starting in Feb. 2002, I had chronic Sinus Infections and was on anti-biotics for 3 months. My fatigue increased, I started having bowel irregularities. When I would participate in physical activities or do patient transfers, things that I normally had to work a little at but were no big deal, I would break out in profuse sweating and overheating. By the summer, I was in severe pain in my lower abdomen and back, and was having to take several days off at a time due to severe constipation. I finally saw a Gastro-enterologist who diagnosed pseudo-membranous colitis (colitis from over-use of antibiotics, killing the beneficial bacteria and allowing an overgrowth of C-Deficil). By the time, I filed my Occupational Health Report, in September 2002, linking my symptoms to something in the workplace, 3/4's of the Center's employees had also filed reports, and an Environmental Study had been initiated in March of 2002. By this time, my eyes were often swollen, I had a constantly sore throat with rough voice, headaches, terrible bowel/back pain and I was exhausted, and barely functioning. One of my co-workers in the Pediatric Area had stopped coming into work, her symptoms were so bad, and she was seeing an allergy specialist in a larger town, who wanted to see the three of us who had the worst symptoms. After numerous tests, he ordered all of us to stay out of work for at least two weeks, then six weeks for two of my co-workers as the Allergist found both the physical and emotional work environment toxic. My two co-workers returned to work in an adjacent facility for two months, but found the Administrative relationship untenable and tendered their resignations on Dec. 19th. The Environmental Study did find some air ducts never connected. Soil adjacent to an office and a treatment room that was wet and under a heated sidewalk, unexplained water in a sewer access in a treatment room, and mold in an electrical room. I was never able to return to work and was released from my workplace of 14 years on Dec. 31st, 2002. There-in was my first secret sorrow. Because it was a Work Comp Case, all our Co-workers were ordered not to have any face-to-face or phone contact with us. We had celebrated birthdays, I had two babies at that hospital, countless Christmas Parties and Present Exhanges. We were a family, a community. There were no good-bye parties, no cards, no phone calls to inquire how we were doing, or if there could be help. My office was actually packed up for me, and I am still coming across things I realize that must never have been packed. Because many of my own personal toys and manipulatives were in among the therapy toys, the Center Vice-President accompanied me to the therapy rooms, while I combed through and culled my equipment. At the time I stopped working in September, I was working full time, was Sunday School Superintendent and Teacher, Fibromyalgia Support Group Facilitator, Special Needs Support Group Co-Founder and Facilitator, and High School Youth Group Leader. I gave up all these positions, as I just no longer had the energy.
Once we realized that my two co-workers would no longer be able to work for the hospital, we started hatching plans to have our own practice, two Pediatric OT's and a Speech Therapist. I found a temporary facility, which my husband spent his Christmas Vacation remodeling at no cost to us. We contracted for a new contaminant free facility to be built in a new shopping development in town. My two co-workers started treatment after Christmas. From the beginning, I knew that my illness was more complicated because of my Fibromyalgia and my colitis, etc. I tried to voice my concerns, but quickly got caught up in the euphoria of planning a practice where our Practice Philosophies held strong. Unfortunately, as time, progressed, it became more and more clear, that I was not improving. Although, I came almost daily to help in set-up, license applications, etc. my stamina, endurance and energy levels just were not improving. My pain levels were also increasing. Finally, my co-workers had the Development Real Estate Agent contact me to tell me that if I couldn't commit to start on a certain date, that I needed to pull out of the contract. Although, I suspected this was coming, I felt blindsided and betrayed because my co-workers did not have the guts to discuss it with me themselves. In six months, I lost two jobs, and all my friends, hobbies, and extra-curricular activities. I stopped attending church, because it was too painful to sit so long, and too exhausting to deal with people's well-meant inquiries regarding my health. My husband had great difficulty in understanding what was going on with my health. Initially, we thought it would just be six months to a year, which I could engage in Continuing Education and get back on my feet. I actually sat for and passed Advance Certification in Pediatric Occupational Therapy. A Certificate I was never able to use.
I had to file an appeal for a full 3 months coverage of Workmans Compensation as they only wanted to cover a month and a half. I fought for benefits from my two Long-term Disability Policies for three years before I received benefits. I was ultimately diagnosed with Chronic Fatigue Syndrome brought on by allergies to mold in the workplace. It took me 5 years before I was awarded Social Security, 2 paper appeals and two physical hearings. Because they sent the initial SSI award to my bank account that had been closed for three years, it took an additional year before I received the actual benefits. Because both of my disability policies offset for my receiving SSI, once I started receiving Social Security benefits, I was receiving $8400 dollars/year less than before I started receiving Social Security.
Stopping work was strange. I prayed for somebody to tell me I was too ill to continue. I got that, but the actual symptoms that ultimately interfered with my being able to work, were not what I was initially pulled out of work for. I fought for my health and livelihood. And then all of a sudden, I realized I couldn't do it any more. It was just over. No fanfare, no going away parties, no funerals. I had one friend from work who called and kept in touch, but she hadn't even been my closest co-worker. The parents of my patients were another story however. I still keep in touch with several, and will run into them out in the community. So this is my secret sadness I guess. That I did not get to say good-bye to a life until it was already gone. And my friends... just, disappeared.
And tho I have talked through and mourned, this is still a pang I feel around my heart that I can't seem to let go all the way.
In Peace and Love,
Kismet
As You know I share Your pain. My life came to an abrupt halt also. I struggled with the feelings of uselessness because of My age and was angry, why Me? If I didn't have My "patient" to take care of I would probably go insane. That is what keeps Me going.Sending You much Love and Hugs!
ReplyDeleteOh Susan. God bless you. We speak the same language, share the same pain.I thank you for always having the empathy and courage to let me know just how my writings impact you. Isn't that what it's about? Shared pains and burdens lighten the load. They are a beacon of hope in the darkness. You are not alone. Someone else hurts the same as you. You have found a friend, a fellow traveler on this new road that is now your life. Blessings on all those who are now traveling the Unintended Road. May we see it as just another way to get where we're going.
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