Sun light woke me about 5AM. As usual the bladder would not let me lay in my trusty rusty recliner any longer, so I had to get my pug, Susie, to let me get up so I could get my large frame out of the rickety recliner which is in itself quite a feat and should be considered exercise this early in the morning. Having neuropathy in both feet makes this an even more thrilling adventure first thing in the morning as my feet don't like the pressure of my body. Oh well, most mornings start off just like this. Recap: Sun light, full bladder, sleepy dog, hurting feet prolonged agony until the day must begin and I must put feet to carpet and begin the day by making my trip to the bathroom. Return to trusty rusty recliner, move Susie slightly, sit, recline, grab phone, scan facebook, begin first game of the day. Take my first pill. Ah, this is the life. NOT
I want a meaningful life. I want to go to work like most 55 year old people. I went to college to be able to work until I choose to retire. These strokes and other illnesses have really pulled a number on me. All of you out there that criticize those of us that are on social security and medicare at an early age need to stop and at least wonder what put us here. For most of us it is not by choice. For me it was an undiagnosed blood disorder. This neuropathy has me where some days I cannot walk without excruciating pain in my feet and legs , in fact all days I walk like the penguin on Batman. WTF. I did not sign up to play that role.
I signed up to be a behavior analyst, and by most I was considered to be quite good at my job. However at the age of 50 my first stroke hit. It was blamed on smoking. I quit. The second stroke hit at 52. This one had no reason, so tests were run and it was discovered that I have APS, antiphospolipid syndrome. According to the Mayo Clinic, Antiphospholipid syndrome is a disorder in which your immune system
mistakenly produces antibodies against certain normal proteins in your
blood. Antiphospholipid syndrome can cause blood clots to form within
your arteries or veins as well as pregnancy complications, such as
miscarriages and stillbirths. http://www.mayoclinic.com/health Another symptom of this disorder is migraines.
I had migraines from the time I was seven. In fact they were so bad that I was on disability for the first time at the age of 40. My doctors finally got me on medications where I could return to work. Had they only done a simple blood test the strokes I have suffered which have turned my life upside down could have been prevented.
The side effect since both strokes are short term memory deficits, balance issues, spelling problems, math problems, mild aphasia, can't control appetite, anger issues, over emotional, and double vision. Given these issues I am unable to continue my work with the developmentally delayed population. However, I am in therapy to work towards fixing the aforementioned issues and I continue to maintain my credentials with the hopes of one day being able to work with this population again.
There is no greater joy that helping an autistic child learn to communicate his or her needs or teaching a developmentally delayed adult that there is a better way to ask for something than banging his or her head. I long for the day that I can be of service once again.
Stroke has robbed me of my life and livelihood. Stroke has robbed my community of a great behavior analyst. Everyone that has unexplained migraine should have this test for this syndrome. It should also be noted that different labs give different results. Depending on where you live you can be tested positive or negative. On the east coast I am negative, on the west coast I am positive. I'm trusting the west coast labs. When I had to go off my blood thinner for a recent surgery, it took three days for my blood to go below a normal humans level and over a month, on blood thinners, to get it up to a normal humans level, and I have to be at least two times that to prevent stroke. So, I know I have thick blood, and so do my doctors. There are other disorders that cause thick blood as well, have them all ruled out!
Ah, now it's time to take that second set of pills, life is good. NOT
Monday, May 27, 2013
Saturday, May 18, 2013
Jody Arias Brings out the Worst in Most of Us: In my humble opinion
Wow, with so much publicity circling around the Jody Arias trial, I figured I should add my two cents: as if anybody really cares. As an ordinary citizen with no connection to this trial I did not know it existed until my sister innocently asked me if I had been watching.
I still have not returned to work since my second stroke. ( I have since had a GI bleed, spent time in ICU, had a complete repair of my rotator cuff due to the fall from fainting from the GI bleed, ah life is so good to me, and I can now cut my lawn again with the assist of a self propelled mower. YEAH.) Since my second stroke I have such ADD symptoms that I usually have about 15 projects going on at one time and I accomplish one, maybe. So with nothing better to do, I turned to HLN (head line news) and watched the trial. I was totally lost. Did not have a clue what was going on. Jody, from here on out with be referred to as, it, was on the stand and I could not follow her. I could not figure out if it was her or me (hello stroke) so I figured maybe I could understand better if I watched the trial from the beginning.
Over the next several weeks I watched each and every day of the trial on YouTube until I was caught up to the current day which by now had some doctor attempting to claim it was suffering from PTSD (post traumatic stress disorder), a syndrome I happen to have due to several life threatening events concerning my children. (Her symptoms were certainly not like mine. Oh how I would like to forget. Oh how I would like to get a good night sleeps. Hello ADD, Hello Stroke, Hello PTSD, wait, I digress.) I am now caught up with the rest of society and feel vindicated.
What actually brings me to this write this little diddy is what I see in social media concerning the trial and social media in general. What happened to Travis Alexander was Horrific. As far as I am concerned, and I realize my opinion means absolutely nothing, he was totally innocent, he did none of the things accused of him in the trial. And the things he did were justified. What I do not understand about the majority of today's society is the need to use profanity to express themselves.
I think the use of words that were once considered taboo have gone viral and it sickens me. To me, it shows the true state of the nation, or at least social media. When a man or woman can't make a statement without the use of such sickening vicious words, there is something wrong with how we have raised this society. My father would have blushed with bemusement. My mother would, to this day, scold me on this very social media, on which I write. Whether you support it or not, whether you want it to be put to death or not, I think that most of us can be a little more articulate with our choice of words. While you need not think that I am a prude, I have been accused of having a trash mouth, and I am ashamed that I taught my children some choice words I would rather they had learned from someone else. I am only stating that we should learn to self edit when and where we use these words.
Even after two strokes and having my speech taken twice, I have enough respect for myself and others to choose not to enter into a diatribe of curse words that may offend my readers. While we await yet another verdict that will not heal the family of Travis Alexander, I hope a blanket of peace will cover them and shield them from the inarticulate yet well meaning world of social media.
I still have not returned to work since my second stroke. ( I have since had a GI bleed, spent time in ICU, had a complete repair of my rotator cuff due to the fall from fainting from the GI bleed, ah life is so good to me, and I can now cut my lawn again with the assist of a self propelled mower. YEAH.) Since my second stroke I have such ADD symptoms that I usually have about 15 projects going on at one time and I accomplish one, maybe. So with nothing better to do, I turned to HLN (head line news) and watched the trial. I was totally lost. Did not have a clue what was going on. Jody, from here on out with be referred to as, it, was on the stand and I could not follow her. I could not figure out if it was her or me (hello stroke) so I figured maybe I could understand better if I watched the trial from the beginning.
Over the next several weeks I watched each and every day of the trial on YouTube until I was caught up to the current day which by now had some doctor attempting to claim it was suffering from PTSD (post traumatic stress disorder), a syndrome I happen to have due to several life threatening events concerning my children. (Her symptoms were certainly not like mine. Oh how I would like to forget. Oh how I would like to get a good night sleeps. Hello ADD, Hello Stroke, Hello PTSD, wait, I digress.) I am now caught up with the rest of society and feel vindicated.
What actually brings me to this write this little diddy is what I see in social media concerning the trial and social media in general. What happened to Travis Alexander was Horrific. As far as I am concerned, and I realize my opinion means absolutely nothing, he was totally innocent, he did none of the things accused of him in the trial. And the things he did were justified. What I do not understand about the majority of today's society is the need to use profanity to express themselves.
I think the use of words that were once considered taboo have gone viral and it sickens me. To me, it shows the true state of the nation, or at least social media. When a man or woman can't make a statement without the use of such sickening vicious words, there is something wrong with how we have raised this society. My father would have blushed with bemusement. My mother would, to this day, scold me on this very social media, on which I write. Whether you support it or not, whether you want it to be put to death or not, I think that most of us can be a little more articulate with our choice of words. While you need not think that I am a prude, I have been accused of having a trash mouth, and I am ashamed that I taught my children some choice words I would rather they had learned from someone else. I am only stating that we should learn to self edit when and where we use these words.
Even after two strokes and having my speech taken twice, I have enough respect for myself and others to choose not to enter into a diatribe of curse words that may offend my readers. While we await yet another verdict that will not heal the family of Travis Alexander, I hope a blanket of peace will cover them and shield them from the inarticulate yet well meaning world of social media.
Wednesday, April 11, 2012
It's a new day
Aloha, I bled out in February. Lost almost all my blood, but was saved because my husband was home and heard me fall when I passed out. I am trying diligently to get off disability and get back to work. Mean while, I am sharpening up my crochet skills. I have made over a hundred hats. Maybe I am hording. LOL
Well, passing out and the resulting fall to the floor caused a 100% tear to the rotator cuff in my right shoulder which prevented much crocheting. The doctor I went to said the pain was due to the stroke and ordered therapy to strengthen the shoulder. The therapy did not help the pain and when I told this too his assistant she said that he suspected a tear and would want an MRI now. I was fuming. Why put me through all that therapy? Well, the MRI report suggested a small tear. This felt torn in two. But, pain can be a funny thing. When I saw the doctor, he said he felt the tear was perhaps 75% and that it would require an open incision. I was sent back to the primary care physician for release for surgery.
When I saw my primary care physician he refused to sign off on the surgery. He said that due to the blood thinners he did not feel the surgery was necessary. What the hell? This pain was out of control and no one would prescribe pain killers. Most of the time it was necessary for my right arm to be above my head, especially while I was attempting to sleep. Sleep eluded me most of the time as lying down, for some reason, irritated my shoulder. Because he considered me a whiner, my primary care doctor sent me to a hematologist in a bigger town not to far away.
This hematologist took a look at my records and told me I was too special for him to make a call on a blood disorder he did not understand. Therefore, he referred me to a doctor in Birmingham Alabama to make the call as to how to wean me off the blood thinners for the shoulder surgery. Within weeks I was in Birmingham Alabama seeing a young female doctor very familiar with the blood disorder I had been diagnosed with and she like all other doctors felt the need to do the dozens of tests that had been done before. However, she did assure me that no matter what problem I had I would never be refused any surgery just because I have a clotting problem. The procedure would be to come off the pills and get on shots. The shots would be taken for two weeks before the surgery and then I would go back on the pills the night before the surgery and all would be well. And given the doctors in the small town feared my clots, she felt I should have my surgery in Birmingham where she would be close by and the surgeons at this medical school would not fear my conditions. OK then!
Within one week I had an appointment with the lead professor on shoulders. He looked at the CD of my MRI I brought with me and said it looks at least 75% torn and maybe more and said we should schedule the surgery soon. He stated I should never have had the therapy since it was due to an accident and shoulder problems don't appear 3 years after a stroke.
Well, passing out and the resulting fall to the floor caused a 100% tear to the rotator cuff in my right shoulder which prevented much crocheting. The doctor I went to said the pain was due to the stroke and ordered therapy to strengthen the shoulder. The therapy did not help the pain and when I told this too his assistant she said that he suspected a tear and would want an MRI now. I was fuming. Why put me through all that therapy? Well, the MRI report suggested a small tear. This felt torn in two. But, pain can be a funny thing. When I saw the doctor, he said he felt the tear was perhaps 75% and that it would require an open incision. I was sent back to the primary care physician for release for surgery.
When I saw my primary care physician he refused to sign off on the surgery. He said that due to the blood thinners he did not feel the surgery was necessary. What the hell? This pain was out of control and no one would prescribe pain killers. Most of the time it was necessary for my right arm to be above my head, especially while I was attempting to sleep. Sleep eluded me most of the time as lying down, for some reason, irritated my shoulder. Because he considered me a whiner, my primary care doctor sent me to a hematologist in a bigger town not to far away.
This hematologist took a look at my records and told me I was too special for him to make a call on a blood disorder he did not understand. Therefore, he referred me to a doctor in Birmingham Alabama to make the call as to how to wean me off the blood thinners for the shoulder surgery. Within weeks I was in Birmingham Alabama seeing a young female doctor very familiar with the blood disorder I had been diagnosed with and she like all other doctors felt the need to do the dozens of tests that had been done before. However, she did assure me that no matter what problem I had I would never be refused any surgery just because I have a clotting problem. The procedure would be to come off the pills and get on shots. The shots would be taken for two weeks before the surgery and then I would go back on the pills the night before the surgery and all would be well. And given the doctors in the small town feared my clots, she felt I should have my surgery in Birmingham where she would be close by and the surgeons at this medical school would not fear my conditions. OK then!
Within one week I had an appointment with the lead professor on shoulders. He looked at the CD of my MRI I brought with me and said it looks at least 75% torn and maybe more and said we should schedule the surgery soon. He stated I should never have had the therapy since it was due to an accident and shoulder problems don't appear 3 years after a stroke.
Thursday, September 15, 2011
On a clear day...
Today is my first granddaughters 11th birthday. This marks the first birthday I have not been with her in her entire young life. She, her mother, and brother are on Maui. Due to my heath and finances it may be quite some time before I see them face to face. However, a dear friend came to my emotional rescue and asked me to get on Skype to help her study for her board certification exam. I mentored Shanda through her entire masters degree in Applied Behavior Analysis (ABA). I think this is one of my strongest assets: mentoring. So, rather than dwelling in my pity pot, I am now reading up on the next section she needs to go over with me. AH....life is good, my brain is still active, and I can see clearly that my skills as a behavior analyst are still strong. Don't count me out just yet. I may write that book yet.... an incredible life or cultivating pearls (more on this later). Thank you Shanda for keeping me involved during my recovery process.
Recovery from stroke requires: a good friend that has confidence in you.
Recovery from stroke requires: a good friend that has confidence in you.
Wednesday, September 14, 2011
Waiting on Social Security
After my second stroke and ensuing complications, I applied for SSD. Back ground information: I had been on SSD before finishing my master's degree. Therefore, I was entitled to an expedited claim. To date it has taken 10 months for approval. And now, that I have been approved, no one can find my claim in the disbursement department in DC. I have ran out of medications, cannot afford the blood analysis, and cannot afford to see my doctor.
I suggest that anyone who has been treated rudely, waited too long for a claim to be started, waited too long after approval to be placed on benefits, or just simply unsatisfied with any staff working for social security should call his or her congress person and make a formal complaint. (We should never accept being treated bad by a social security representative.) And while you have your representative's agent on the phone insist on a study to determine how long it takes the average disability claim to make it's way through the process.
Nothing will be done to change things if we do not use our voices collectively.
I suggest that anyone who has been treated rudely, waited too long for a claim to be started, waited too long after approval to be placed on benefits, or just simply unsatisfied with any staff working for social security should call his or her congress person and make a formal complaint. (We should never accept being treated bad by a social security representative.) And while you have your representative's agent on the phone insist on a study to determine how long it takes the average disability claim to make it's way through the process.
Nothing will be done to change things if we do not use our voices collectively.
Tuesday, September 13, 2011
In the beginning..... or new beginning.
I moved to the mainland under duress as we could no longer afford to live on the island of Maui.
I literally lost my job due to a second stroke and an envious employer. My employer told me, not nicely, “you are no longer fit to work with humans.” Perhaps this should be prefaced by the fact that my employer had been looking for reasons to put me in my place and get rid of me. The cases I was over had all reached stability. Therefore, the company though they no longer needed me and I was one of the highest paid employees. He had successfully fired many females. He placed one of his office workers as a personal care attendant on one of my cases. She made an unwarranted complaint and he attempted fire me with a human resource representative present. His remark made it impossible for the company to fire me, so I was to be used behind the scene as a product developer for adults with disabilities. It needs to be said that I had no experience in developing software on PC’s. I was offered employment on month to month trial in this new job. I had been his least favorite employee as I was hired solely to save a case the company was about to lose. I was successful and he did everything he could to embarrass me in front of my peers. He never accepted my suggestions in meetings. Given that I had suffered my second stroke just weeks before this complaint, I went to my doctor and she agreed the stress I was under it would be best for me to begin long term sick leave.
The following links support the suggestion that chronic stress may lead to stroke.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC58815/
http://www.sciencedaily.com/releases/2009/10/091001101502.htm
http://www.fi.edu/learn/brain/stress.html
http://oregon.providence.org/patients/programs/providence-stroke-center/Pages/askanexpertlanding.aspx?TemplateName=Ask+an+Expert:+Stress+and+stroke+risk&TemplateType=AskAnExpert
http://www.huffingtonpost.com/2010/11/15/women-who-face-high-stres_n_783345.html
I honestly believe the working conditions I suffered for years added to my stroke. However, up until my last meeting with my employer my commitment to my clients and their families outweighed the harassment I received. I have recently received word from a family member that everything I had accomplished has been undone. How sad that clients are harmed by ego.
I am back in the town where my children were born. Where my son was run over. I am actually living on the land facing the road where he was run down. Family land. My son, just turned 35, and lives with me. He suffered a severe head injury on October 19, 1985, he was nine years old. He was in a coma for about three months. He has recovered more than anyone though possible. I give this recovery to the skills of behavior analysts. His recovery is why I became a behavior analyst. I have a need to help those that are deemed unrecoverable as my son was given up on until I found a facility that used behavior analysis. More on this later.
I am listening to the news as I am writing this piece. There was a piece about combat fatigue and how,” you just can’t switch it off once you have been in combat.” This is how my life has been. A series of combats that involve all my children at separate times. However, all the events involve the entire family; me and my children can’t switch it off. A person need not be a soldier in battle to suffer from Post Traumatic Stress Disorder (PTSD). We are at times given more than we can handle and as the brain attempts to make since of what has happened we become damaged physically by an external event. I suffer from PTSD. I have used the skills I have learned through applied behavior analysis to make my life better. When I witnessed the twin towers go down on television, I knew millions had the potential to suffer from PTSD. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001923/
Millions suffer from this disorder and by not receiving treatment or incorrect diagnosis they seek out other avenues to numb the brain (i.e., alcoholism, drug abuse, obsessive compulsive disorders, etc.,).
http://helpguide.org/mental/post_traumatic_stress_disorder_symptoms_treatment.htm
I literally lost my job due to a second stroke and an envious employer. My employer told me, not nicely, “you are no longer fit to work with humans.” Perhaps this should be prefaced by the fact that my employer had been looking for reasons to put me in my place and get rid of me. The cases I was over had all reached stability. Therefore, the company though they no longer needed me and I was one of the highest paid employees. He had successfully fired many females. He placed one of his office workers as a personal care attendant on one of my cases. She made an unwarranted complaint and he attempted fire me with a human resource representative present. His remark made it impossible for the company to fire me, so I was to be used behind the scene as a product developer for adults with disabilities. It needs to be said that I had no experience in developing software on PC’s. I was offered employment on month to month trial in this new job. I had been his least favorite employee as I was hired solely to save a case the company was about to lose. I was successful and he did everything he could to embarrass me in front of my peers. He never accepted my suggestions in meetings. Given that I had suffered my second stroke just weeks before this complaint, I went to my doctor and she agreed the stress I was under it would be best for me to begin long term sick leave.
The following links support the suggestion that chronic stress may lead to stroke.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC58815/
http://www.sciencedaily.com/releases/2009/10/091001101502.htm
http://www.fi.edu/learn/brain/stress.html
http://oregon.providence.org/patients/programs/providence-stroke-center/Pages/askanexpertlanding.aspx?TemplateName=Ask+an+Expert:+Stress+and+stroke+risk&TemplateType=AskAnExpert
http://www.huffingtonpost.com/2010/11/15/women-who-face-high-stres_n_783345.html
I honestly believe the working conditions I suffered for years added to my stroke. However, up until my last meeting with my employer my commitment to my clients and their families outweighed the harassment I received. I have recently received word from a family member that everything I had accomplished has been undone. How sad that clients are harmed by ego.
I am back in the town where my children were born. Where my son was run over. I am actually living on the land facing the road where he was run down. Family land. My son, just turned 35, and lives with me. He suffered a severe head injury on October 19, 1985, he was nine years old. He was in a coma for about three months. He has recovered more than anyone though possible. I give this recovery to the skills of behavior analysts. His recovery is why I became a behavior analyst. I have a need to help those that are deemed unrecoverable as my son was given up on until I found a facility that used behavior analysis. More on this later.
I am listening to the news as I am writing this piece. There was a piece about combat fatigue and how,” you just can’t switch it off once you have been in combat.” This is how my life has been. A series of combats that involve all my children at separate times. However, all the events involve the entire family; me and my children can’t switch it off. A person need not be a soldier in battle to suffer from Post Traumatic Stress Disorder (PTSD). We are at times given more than we can handle and as the brain attempts to make since of what has happened we become damaged physically by an external event. I suffer from PTSD. I have used the skills I have learned through applied behavior analysis to make my life better. When I witnessed the twin towers go down on television, I knew millions had the potential to suffer from PTSD. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001923/
Millions suffer from this disorder and by not receiving treatment or incorrect diagnosis they seek out other avenues to numb the brain (i.e., alcoholism, drug abuse, obsessive compulsive disorders, etc.,).
http://helpguide.org/mental/post_traumatic_stress_disorder_symptoms_treatment.htm
Ok, my ramblings have covered several subjects albeit none well. I will attempt to add to this blog daily. I have lived a most interesting life which could qualify for a Hallmark movie. I hope that these few words and those to come might help others going through tragic events.
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