So I painfully waited my appointment with this unknown neurologist. I was very scared. Why did this take so long? I read about all the treatments and the scary part was that it was mentioned over and over that you must get on treatment right away after the 3rd attack. I was still experiencing the third attack - stiffness in my right arm, spasticity, itchy neck, left leg weakness, headaches, you name it. on the day of the appointment, the doctor walked in. He was so old I swore I saw him in the picture with Jesus at the last supper. My heart sunk. He then asked me, non-chalantly, "How can I help you today?". I was flabbergasted. "!What?!", I ou have to fucking kidding me! I have waited 3 months in excruciating pain and was told that you would have all the answers! have you looked at my MRI's? Do you know why I am going through this? Dr. park said I may have MS. I am here to see if those are the findings you have." He was shocked. "Let me get your films", he said as he got up to walk out the door. He then stopped. "Before I do that, I need to give you a physical exam." He then proceeded to do what we all know to be the functional capacity exam. Check reflexes, eye movement, feeling with a pin, tell me when the tuning fork stops, etc.
"your physical exam is excellent, " he declared. "Great," I answered, "the disease is like a ghost, when you summon it, it never shows, but the minute I walk out the door it will rear it's ugly head." he left to get the films.
He was gone for awhile, came back and informed me they had not been sent to his office. I was very angry at this point. "You folks could not get this shit together in 3 months?" I was pissed. And I never mince words. Note to self, always stay on top of the lemmings; otherwise they sabotage your life.
He then got word the films were available on the computer. I went to the rest room. We talked about the films and what they said. I asked that he point out on my body where the spots were. He showed me on my spine what the films were saying. He then told me he thought my pain was coming from a spot in my back between my shoulder blades.
he then set an appointment for a spinal tap. No fun in that. In the meantime, he made me suffer longer before he would give me any treatment. I went and got blood tests to rule out all other diseases. I cried all the way home. I called work and spoke with Hugh, an attorney at the office. "Not to be selfish, " he said, "but maybe if you came to work you can keep your mind off of this. I find it works for me." I agreed and went to work. It turned out to be the best decision I made.
Larry, another attorney in the office saw me crying. He came to me and said, "That's it. I know the lead epilepsy doctor at UCH. Call him and he will get you a referral to the best neurological team in the state. I called, and although it was another long wait, it was the best call I ever made. Meanwhile, my blood tests revealed I was healthy, ruling out all diseases, except MS, which I was having all the telltale symptoms of.
Next: Spinal taps suck! The experience of a tap, whether or not you need it and my final diagnosis.
Tuesday, December 21, 2010
Monday, December 20, 2010
Diagnosis dilemma
Flash back to June 18, 2008. All my life I was considered the child that got the most attention for one reason or another; none of it serious. My brothers seemed intent on doing things to please my parents - even if it meant lying about things they did that were not so "savory." Unfortunately, they got little attention and no kudos.
In the early 90's my brother Marc got cancer. He got little attention from myself and the twins as we knew mom would fight hard for her "sunshine child". We all stayed posted, but we knew he would not want for much; especially since hearing our grandmother paid for a chunk of his hospital bill. Marc often irritated us because he set a bad example. At the time of his diagnosis, he was new in the film industry and had not gotten health insurance. After his trip to remission, and mom could breathe again, the twins and I got letters delineating the way in which we would receive money for help if needed after Nana died. At the top of that list was health insurance. We all could have cared less - as if she really would help! We were healthy, young and not really all that interested in her money. We were floored, as a side note, that after a childhood of hearing how we had college funds set aside we were never going to see those funds. They apparently went to a pool, in which we as children were not of a mature enough age to really decide between a pool or college. Seriously, how many of you have kids or were kids that cannot see past the next Nintendo game or the next holiday or birthday and think college is light years away? Personally, I never remember being asked and I think the entire thing was rigged so my parents could get a pool. Seriously, we lived on a golf course with a two story house, huge screened in patio, 4 bedrooms and four bathrooms (a cabana bathroom as well which is right off the pool so guests can change & shower); what more could you need?
So, the precedent was set by the sunshine child and we were quite agitated. How could you have a job without health insurance, and why did mom seem to think our propensity to be responsible was tied to whether or not we had health insurance.
Fast forward 15 years to my diagnostic demise. The first thing she asked was whether or not I had health insurance. So caring. The second comment was "isn't it great you have good friends such as Erin who will take care of you?' Totally shifting the responsibility to a non-family member without their consent. Never even asked Erin if she was up to the task, and when I told her, she was shocked (not sure why).
Dad, on the other hand, was quick to tell me how the family would come together to get through this. I was so touched. Meanwhile, Richie called and asked me if it was hereditary. Hmm, I am sure he was so concerned about the arm stiffness, spasms, itchy neck, numbness on my right side and slurring of my speech. Such concern; for himself. My brother John was no where to be found; I was in LA at Marc's when I got the diagnosis. It was my birthday weekend and I liked spending it with my friend Johnnie in LA at the time. However, it was 117 degrees, he had an apartment the size of a postage stamp and I was not comfortable no matter how hard I tried. I called my brother Marc and he agreed to let me stay with he and his family.
Marc, although being annoying in that he had set precedent 15 years earlier, the one thing he was well apprised in the quelling of anxiety due to a not so grand diagnosis. He and his boys, my nephews, decided to take me to see Kung Fu Panda. While the movie was funny, I was crying quietly in my chair as I faced my new diagnosis with a mixture of fear, dread and relief. What would come of me? Would I be in a wheelchair? How did this happen? Why me? I asked that many times, and still do it on occasions when I get very ill. Sometimes the disease itself can be debilitating - without the help of viruses or other immune system stimulators. In a word, no matter how you slice it, it sucks. I dreaded the future. I had no idea what to expect. I heard so little about this disease. Ironically, I had a friend in Seattle that was just devastated by it and I spent many hours with her; Susan. She was a great person. I later told her about my diagnosis and she was devastated.
My brother looked over at me crying in the theater and had to sense what I was going through. He leaned over and told me "Dad told me the corniest thing when I got sick. He said "Look up, it will make you feel better." I laughed. But it worked. Try it", he said, showing compassion.
I did try it but think I was too shocked and the time was too early for me to feel comfortable with my new life. The weekend went on, and I was scared to death. I was told the earliest I could see a neurologist was 3 months later. That was just a travesty. how was I going to cope until then?
Next: meeting the Doctor of Death; my first neurologist who was sure to be a classmate with Christ he was so old.
In the early 90's my brother Marc got cancer. He got little attention from myself and the twins as we knew mom would fight hard for her "sunshine child". We all stayed posted, but we knew he would not want for much; especially since hearing our grandmother paid for a chunk of his hospital bill. Marc often irritated us because he set a bad example. At the time of his diagnosis, he was new in the film industry and had not gotten health insurance. After his trip to remission, and mom could breathe again, the twins and I got letters delineating the way in which we would receive money for help if needed after Nana died. At the top of that list was health insurance. We all could have cared less - as if she really would help! We were healthy, young and not really all that interested in her money. We were floored, as a side note, that after a childhood of hearing how we had college funds set aside we were never going to see those funds. They apparently went to a pool, in which we as children were not of a mature enough age to really decide between a pool or college. Seriously, how many of you have kids or were kids that cannot see past the next Nintendo game or the next holiday or birthday and think college is light years away? Personally, I never remember being asked and I think the entire thing was rigged so my parents could get a pool. Seriously, we lived on a golf course with a two story house, huge screened in patio, 4 bedrooms and four bathrooms (a cabana bathroom as well which is right off the pool so guests can change & shower); what more could you need?
So, the precedent was set by the sunshine child and we were quite agitated. How could you have a job without health insurance, and why did mom seem to think our propensity to be responsible was tied to whether or not we had health insurance.
Fast forward 15 years to my diagnostic demise. The first thing she asked was whether or not I had health insurance. So caring. The second comment was "isn't it great you have good friends such as Erin who will take care of you?' Totally shifting the responsibility to a non-family member without their consent. Never even asked Erin if she was up to the task, and when I told her, she was shocked (not sure why).
Dad, on the other hand, was quick to tell me how the family would come together to get through this. I was so touched. Meanwhile, Richie called and asked me if it was hereditary. Hmm, I am sure he was so concerned about the arm stiffness, spasms, itchy neck, numbness on my right side and slurring of my speech. Such concern; for himself. My brother John was no where to be found; I was in LA at Marc's when I got the diagnosis. It was my birthday weekend and I liked spending it with my friend Johnnie in LA at the time. However, it was 117 degrees, he had an apartment the size of a postage stamp and I was not comfortable no matter how hard I tried. I called my brother Marc and he agreed to let me stay with he and his family.
Marc, although being annoying in that he had set precedent 15 years earlier, the one thing he was well apprised in the quelling of anxiety due to a not so grand diagnosis. He and his boys, my nephews, decided to take me to see Kung Fu Panda. While the movie was funny, I was crying quietly in my chair as I faced my new diagnosis with a mixture of fear, dread and relief. What would come of me? Would I be in a wheelchair? How did this happen? Why me? I asked that many times, and still do it on occasions when I get very ill. Sometimes the disease itself can be debilitating - without the help of viruses or other immune system stimulators. In a word, no matter how you slice it, it sucks. I dreaded the future. I had no idea what to expect. I heard so little about this disease. Ironically, I had a friend in Seattle that was just devastated by it and I spent many hours with her; Susan. She was a great person. I later told her about my diagnosis and she was devastated.
My brother looked over at me crying in the theater and had to sense what I was going through. He leaned over and told me "Dad told me the corniest thing when I got sick. He said "Look up, it will make you feel better." I laughed. But it worked. Try it", he said, showing compassion.
I did try it but think I was too shocked and the time was too early for me to feel comfortable with my new life. The weekend went on, and I was scared to death. I was told the earliest I could see a neurologist was 3 months later. That was just a travesty. how was I going to cope until then?
Next: meeting the Doctor of Death; my first neurologist who was sure to be a classmate with Christ he was so old.
Saturday, December 18, 2010
The tremble of tremors
When I say tremors at this point, I meant the anxiety about why things are happening to the body that I have no control over.
These past two weeks i have gone through major headaches like I have never experienced. I try processing the fear and can never figure out where they come from or why. It is baffling.
Two months ago I was suicidal, seriously, because I was taking a cocktail of pills that were prescribed to me. When a person goes to the doctor they expect the right hand knows what the left is doing. in my case, I was on adderol and was becoming very aggressive. So I went to the pharmacist, and they advised me that was the problem. I went off of it, but was still taking clenazepam, wellbutrin and Xanax on occasion. Depressed? You betcha. I weeped, cried, was unable to process any feelings without feeling hopeless - then after contemplating suicide, which is not my bag, I snapped out of it. I then called the doc and got back on my first regimine. Long story; which I will post another day.
These are the incidents that grow up around my disease and I wonder what all contributes to my feeling so unhealthy. I eat right, exercise, walk, play, laugh and do as much as I can to feel well. I have to get away from the drug pushers; which I am no longer on controlled substances, and I am very proud of this.
The tremble comes from the uncertainty of these things and what the future holds, and I get tremors of fear. I am so afraid - what will happen to me? Although I was glad to know the root of my health issues, I met it with bot relief and dread. The relief fads away as the dread fills me due to the lack of knowledge in the field.
*sigh*.
These past two weeks i have gone through major headaches like I have never experienced. I try processing the fear and can never figure out where they come from or why. It is baffling.
Two months ago I was suicidal, seriously, because I was taking a cocktail of pills that were prescribed to me. When a person goes to the doctor they expect the right hand knows what the left is doing. in my case, I was on adderol and was becoming very aggressive. So I went to the pharmacist, and they advised me that was the problem. I went off of it, but was still taking clenazepam, wellbutrin and Xanax on occasion. Depressed? You betcha. I weeped, cried, was unable to process any feelings without feeling hopeless - then after contemplating suicide, which is not my bag, I snapped out of it. I then called the doc and got back on my first regimine. Long story; which I will post another day.
These are the incidents that grow up around my disease and I wonder what all contributes to my feeling so unhealthy. I eat right, exercise, walk, play, laugh and do as much as I can to feel well. I have to get away from the drug pushers; which I am no longer on controlled substances, and I am very proud of this.
The tremble comes from the uncertainty of these things and what the future holds, and I get tremors of fear. I am so afraid - what will happen to me? Although I was glad to know the root of my health issues, I met it with bot relief and dread. The relief fads away as the dread fills me due to the lack of knowledge in the field.
*sigh*.
Friday, December 17, 2010
The tingle of terror
Things are feeling different health wise. My leg feels weaker, my head constantly hurts, ataxia is a normal occurance - even in my tongue. I am so afraid yet I can't let Lyle know I am not strong. If he thinks for one minute I am going to fall, he may leave.
This has not been proved. he just says things such as, " I can't even take care of me", and, " I can't promise I could be a good caretaker."
Then things get tumultuous and we fight. I decide to move out this weekend and he chases me. I stopped calling. I disconnect the phone for peace and quiet and he calls. He calls my cell which is off. Seems i found the key to our relationship - the more non-chalant I am and disassociated with his behavior and what he says, the more he chases me.
I hate to play that game but now I know he loves me and will do anything to keep me.
Back to the tingle. Geez, I really get scared when the numbness and tingling become present in my limbs. I take neurotin, Xanax, Copaxone and sumatiptan, yet they all seem not to work. I have a month on the Celexa. I hope I can cut the Neurotin to a very small dose. In my next post I will talk about drugs used to treat symptoms.
This has not been proved. he just says things such as, " I can't even take care of me", and, " I can't promise I could be a good caretaker."
Then things get tumultuous and we fight. I decide to move out this weekend and he chases me. I stopped calling. I disconnect the phone for peace and quiet and he calls. He calls my cell which is off. Seems i found the key to our relationship - the more non-chalant I am and disassociated with his behavior and what he says, the more he chases me.
I hate to play that game but now I know he loves me and will do anything to keep me.
Back to the tingle. Geez, I really get scared when the numbness and tingling become present in my limbs. I take neurotin, Xanax, Copaxone and sumatiptan, yet they all seem not to work. I have a month on the Celexa. I hope I can cut the Neurotin to a very small dose. In my next post I will talk about drugs used to treat symptoms.
Co-owner of startup with fiancée - wishful thinking
Somehow, I am not sure at this point, things are just not working out as planned. I want them to be easy, happy and breezy. I am done with stress. I have a part time or less than part time job as a paralegal again - barely getting started and hope to be on disability and continue to work part time.
Just like my relationship, law is another area that I love yet am ambivalent about staying in because of the undue stress. I try to leave it behind and the dream two dreams keep tapping me on the shoulder - to be a lawyer and be married and live and love for the rest of my quality life. Just like my relationship - it seems I could always see it or try another way to approach and grow in it.
I can tell you two things about my life right now. Mid-life crisis is not about sex or your partner and how much you are getting. It is about looking down the barrel of the past and wondering how you got to the present and what it has done to the future laid before you. Every day I ask the universe - what choices have I made to shape the future. Everyday I hear a voice that tells me I am the one who creates my future and the sooner I realize I am responsible for my current conditions, really down to the core realize it, I have the power to change it.
I love Lyle. I have begun "A Course in Miracles" and already it is so unbelievable the pressure the exercises have lifted from my shoulders. No longer do I have unrealistic expectations of this man - I accept him as he is. He is trying hard to make me happy in a confusing, baffling, overloaded world of responsibilities of his own. His biggest wish is to love me and for me to love him and trust him. So yesterday I meditated on this and the answer came back from deep inside me - you must forgive those in the past for what they did not do; and love them for what they did. Anyway, the idea here is not to preach - we all have our own spiritual paths and I hope I have found mine.
The other issue in my life is my health. The same intelligence that created MS can cure it. How do I tap into this? That is my next journey. I have to leave all else behind.
Just like my relationship, law is another area that I love yet am ambivalent about staying in because of the undue stress. I try to leave it behind and the dream two dreams keep tapping me on the shoulder - to be a lawyer and be married and live and love for the rest of my quality life. Just like my relationship - it seems I could always see it or try another way to approach and grow in it.
I can tell you two things about my life right now. Mid-life crisis is not about sex or your partner and how much you are getting. It is about looking down the barrel of the past and wondering how you got to the present and what it has done to the future laid before you. Every day I ask the universe - what choices have I made to shape the future. Everyday I hear a voice that tells me I am the one who creates my future and the sooner I realize I am responsible for my current conditions, really down to the core realize it, I have the power to change it.
I love Lyle. I have begun "A Course in Miracles" and already it is so unbelievable the pressure the exercises have lifted from my shoulders. No longer do I have unrealistic expectations of this man - I accept him as he is. He is trying hard to make me happy in a confusing, baffling, overloaded world of responsibilities of his own. His biggest wish is to love me and for me to love him and trust him. So yesterday I meditated on this and the answer came back from deep inside me - you must forgive those in the past for what they did not do; and love them for what they did. Anyway, the idea here is not to preach - we all have our own spiritual paths and I hope I have found mine.
The other issue in my life is my health. The same intelligence that created MS can cure it. How do I tap into this? That is my next journey. I have to leave all else behind.
Monday, August 23, 2010
Wow - been awhile
Last post was in May. I turned 43 in June, met a great guy and we live together now, have a black hole in my brain, irrespective of the meds, and I am progressive. I can add more later; now I have to go.
Thursday, May 6, 2010
Blog on Facebook | My Blog
You all know I have MS. I have had it all my life. I always, in the seat of my soul, knew I had something, just could not put my finger on it. I searched for years, saw every psychic and guru, doctor and healer, and found no answers. I had a silent, unspoken expectation that they would find this thing tugging at the seat of my soul, but ironically, in 1996, just before I was to get married to #2, my right side went numb (neck to foot) and a psychiatrist of all professionals told me I had two options - 1) test for MS or; 2) take Prozac, go home, and call him if the numbness went away. A month later it was gone, I left #2 (hence the "runaway bride" nickname) because I felt it was not right. He actually agreed and we are still friends as he is a great guy.
I moved to LA that year and became a costume designer for independent film. The incident of numbness was long forgotten, but boy did I play! And yes, with boys! Working boys, doctor boys, lawyer boys, acting boys and stunt man boys. In between I worked, which made me so much better at what I did. I had found a passion, and it fed upon itself positively!
No fun was spared. If I saw a great time, I dove in to it vigorously, no matter what kind. I was on a mission to release my inner judge and jury, as well as that conservative person my parents tricked me into being. I said no more, meant it, and lived my life without restraint.
All good things end, and film moved to Canada. I moved laterally to management, which brought back the staunch, stale, monotone and conservative person. What a shame, eh? I lived that way for 4 more months in LA and could not stand it; I had to move. There were 2 openings in the company - one in Baltimore (the other armpit of the USA, LA being it's twin) or Seattle. Off I went to Seattle and had even more fun. Oh the fun I had there. What a great place; but eventually the weather gets you and you either die or leave, so I went to Maui and lived there for a year.
I have lived in NYC, Long Island, Atlanta, LA, Seattle, Maui - and now Denver. I had a calling to come here 4 years ago and now I know why. There are many small reasons, but the large one was to change my life. To shift my thinking and get to my purpose. To find out what was driving my anger and resentment that I carried for 9 years and denied existed.
While in Maui, I decided I did not want to stay in management; what a thankless job of self flagellation. I decided to go into law, and I was in school at the time, so I changed my major to legal studies. It was not long after I came to Denver I was a paralegal in general law. I became REALLY good at it, and decided law school it is. I was then diagnosed with MS, which perplexed and scared me more than anything, but i met it with relief and dread.
I worked for 5 attorneys for 3 years and they retired, so I went to Florida for a month and came back and found a job with a very bad attorney. The previous attorneys were "AV" rated attorneys (the highest rating you can get) and REALLY brilliant men. This man was a dumb ass that was in it for the money. AV attorneys know that they are nothing other than the protectors of the Constitution. Period.
Long story short, dumb ass constructively discharged me in September of '09 and assaulted me out of his office for asking for an accommodation; a schedule of 8 hours per day. I was working 10-15 at the time and getting sicker. I am in 2 lawsuits with him and he appealed my unemployment. Yes, he is an asshole, but in order to hold him responsible for his actions, I had to forgive him. More on that in a minute.
During my legal request under Colorado statute, he illegally asked me to get tests unrelated to my job function. One of them was a neuropsychological test that measures cognitive function, which showed I was mildly impaired. Unfortunately, when I brought it to a social worker in March, she looked at all my tests, told me I was in denial about my disease and that I could never be an attorney.
I could never be an attorney. The room spun. I got angry. I stood up, grabbed my tests and left. I went home, called a friend and said, "send the cianide, it's time for me to go." I got into the child's pose, stayed there for an hour and told the universe, "This is it. I am tired of the fight. I am tired of the disappointments. I am tired of going to bed every night and praying for death and waking up to the disappointment of being alive for this idiodic thing you call life. I can't do this anymore. You have taken the last thing away from me that I could hold and have hope in. If this is all it is, I am done."
The next day, I got an e-mail from my friend Dee. It was for a presentation about how to finish old emotional experiences. I went. It saved my life.
The man who led it, Tom, told of how he got vets to finish old emotional experiences from war which caused PTSD. Many of them MANY of them never got help; they simply killed themselves due to survivor guilt, images they saw running around in their heads and other painful emotions they could not cope with. I raised my hand. He called on me. I asked, "Do you deal with death wishes?" he answered, "How long have you had it?" and without thinking, I blurted out, "All my life". He then stated, "Yes."
I called his company and they gave me a scholarship to his upcoming 5 day workshop in late March. I went every day. I raised my hand. Finally, I pulled him aside and told him, "I want to work with you. Not one of your trainers, not one of your groupies, you. I was desperate; I knew if he did not work with me I would die.
He called on me the next day. I had such a profound experience that myself and 150 others thought they were abducted and brought back to earth.My life has shifted and so has my attitude. I cannot believe the things that have come into my life since. The largest gift is peace. My head no longer chatters on and on and on and on. Then there is forgiveness. I finally, authentically have forgiven my parents. I forgave the lawyer, and now I know the difference between justice (holding a person responsible for their actions) and revenge (using justice to force an outcome or teach a lesson). Now I can be a good attorney, like the attorneys I worked for when I came here.
The moral of the story - if you want your life to work, you have to work at it. Accept and love yourself and love yourself. Then comes abundance. Then comes that person you align with. Then come all the things you desire.
Did I mention I met a great guy? An authentic, real, down to earth, honest man? Yeah, he is one hell of a gift. A keeper. Tom was the first person to break through my intellect to get to the seat of my soul. Lyle broke through my fear and found his way to my heart. Funny things is, nothing else matters; I know it will all come to me the more I stay on my path.
I moved to LA that year and became a costume designer for independent film. The incident of numbness was long forgotten, but boy did I play! And yes, with boys! Working boys, doctor boys, lawyer boys, acting boys and stunt man boys. In between I worked, which made me so much better at what I did. I had found a passion, and it fed upon itself positively!
No fun was spared. If I saw a great time, I dove in to it vigorously, no matter what kind. I was on a mission to release my inner judge and jury, as well as that conservative person my parents tricked me into being. I said no more, meant it, and lived my life without restraint.
All good things end, and film moved to Canada. I moved laterally to management, which brought back the staunch, stale, monotone and conservative person. What a shame, eh? I lived that way for 4 more months in LA and could not stand it; I had to move. There were 2 openings in the company - one in Baltimore (the other armpit of the USA, LA being it's twin) or Seattle. Off I went to Seattle and had even more fun. Oh the fun I had there. What a great place; but eventually the weather gets you and you either die or leave, so I went to Maui and lived there for a year.
I have lived in NYC, Long Island, Atlanta, LA, Seattle, Maui - and now Denver. I had a calling to come here 4 years ago and now I know why. There are many small reasons, but the large one was to change my life. To shift my thinking and get to my purpose. To find out what was driving my anger and resentment that I carried for 9 years and denied existed.
While in Maui, I decided I did not want to stay in management; what a thankless job of self flagellation. I decided to go into law, and I was in school at the time, so I changed my major to legal studies. It was not long after I came to Denver I was a paralegal in general law. I became REALLY good at it, and decided law school it is. I was then diagnosed with MS, which perplexed and scared me more than anything, but i met it with relief and dread.
I worked for 5 attorneys for 3 years and they retired, so I went to Florida for a month and came back and found a job with a very bad attorney. The previous attorneys were "AV" rated attorneys (the highest rating you can get) and REALLY brilliant men. This man was a dumb ass that was in it for the money. AV attorneys know that they are nothing other than the protectors of the Constitution. Period.
Long story short, dumb ass constructively discharged me in September of '09 and assaulted me out of his office for asking for an accommodation; a schedule of 8 hours per day. I was working 10-15 at the time and getting sicker. I am in 2 lawsuits with him and he appealed my unemployment. Yes, he is an asshole, but in order to hold him responsible for his actions, I had to forgive him. More on that in a minute.
During my legal request under Colorado statute, he illegally asked me to get tests unrelated to my job function. One of them was a neuropsychological test that measures cognitive function, which showed I was mildly impaired. Unfortunately, when I brought it to a social worker in March, she looked at all my tests, told me I was in denial about my disease and that I could never be an attorney.
I could never be an attorney. The room spun. I got angry. I stood up, grabbed my tests and left. I went home, called a friend and said, "send the cianide, it's time for me to go." I got into the child's pose, stayed there for an hour and told the universe, "This is it. I am tired of the fight. I am tired of the disappointments. I am tired of going to bed every night and praying for death and waking up to the disappointment of being alive for this idiodic thing you call life. I can't do this anymore. You have taken the last thing away from me that I could hold and have hope in. If this is all it is, I am done."
The next day, I got an e-mail from my friend Dee. It was for a presentation about how to finish old emotional experiences. I went. It saved my life.
The man who led it, Tom, told of how he got vets to finish old emotional experiences from war which caused PTSD. Many of them MANY of them never got help; they simply killed themselves due to survivor guilt, images they saw running around in their heads and other painful emotions they could not cope with. I raised my hand. He called on me. I asked, "Do you deal with death wishes?" he answered, "How long have you had it?" and without thinking, I blurted out, "All my life". He then stated, "Yes."
I called his company and they gave me a scholarship to his upcoming 5 day workshop in late March. I went every day. I raised my hand. Finally, I pulled him aside and told him, "I want to work with you. Not one of your trainers, not one of your groupies, you. I was desperate; I knew if he did not work with me I would die.
He called on me the next day. I had such a profound experience that myself and 150 others thought they were abducted and brought back to earth.My life has shifted and so has my attitude. I cannot believe the things that have come into my life since. The largest gift is peace. My head no longer chatters on and on and on and on. Then there is forgiveness. I finally, authentically have forgiven my parents. I forgave the lawyer, and now I know the difference between justice (holding a person responsible for their actions) and revenge (using justice to force an outcome or teach a lesson). Now I can be a good attorney, like the attorneys I worked for when I came here.
The moral of the story - if you want your life to work, you have to work at it. Accept and love yourself and love yourself. Then comes abundance. Then comes that person you align with. Then come all the things you desire.
Did I mention I met a great guy? An authentic, real, down to earth, honest man? Yeah, he is one hell of a gift. A keeper. Tom was the first person to break through my intellect to get to the seat of my soul. Lyle broke through my fear and found his way to my heart. Funny things is, nothing else matters; I know it will all come to me the more I stay on my path.
Sunday, February 28, 2010
PatientsLikeMe : Home
PatientsLikeMe : Home
Another site just for us that really helps chart your progress. You can also talk with others, check out meds they take and print out a doctor visit sheet to use for questions. I love this site!
My Very Necessary Medical I.D. Card
My Very Necessary Medical I.D. Card
This is the best use of 40.00 I have spent in years. I have an ID card, key card tag, 2 stickers for my car and a printout for my service dog that goes in his badge. I also got a prescription discount card.
Downloading information was easy and I have all my information in one place now. Love it!!!
Saturday, February 27, 2010
Losing weight with MS
Back in 2008 I was struggling with my weight before I got my diagnosis. I moved to Colorado from Maui where I had no car and had to walk everywhere, and before then I lived in downtown Seattle where I wanted to walk everywhere even though I had a car. All this kept me trim year round as the weather allowed for it (you get used to the rain in Seattle and walk in it daily).
So I come to Colorado to my best friends' home and she is a chef. Food is included in rent. She has a weight issue, and is struggling with many diets, but I change my diet to hers, which is very sugary, starchy and fatty. My weight went up and down, until finally she went on the Atkins Diet, and so did I.
Well I lost about 20 lbs, but I was already almost 170, so I kept going. She only lost 10 pounds and gave up, but I continued to eat complex carbs and protein.
Then I hit a wall. I was not exercising, and right about that time I got diagnosed and I was so depressed, even though I had lost 4 inches on my waist, I went up to 180. I stayed there and started tripping all the time, losing my balance and twisting my ankles. Then my GP looked me straight in the eyes and said, "Seriously, if you do not lose weight, you are only going to keep tripping and falling. Your body has to hold that weight and do many other movements which are complicated and with limb weakness, your feet drop and legs can give out on you."
So I went at it again, especially after falling so hard, what they call a drop fall, that I had no idea I had fallen (This is why I got Oliver), and I twisted my left ankle so bad it took months of physical therapy to get it to heal.
So, I switched back to complex carbs - all breads, pastas, starches of any kind are whole grain. I started eating and drinking fiber and acidophilus in my coffee and tea. I cut out sugar COMPLETELY and bought Republic of Tea's "Get Lost", which curbs sugar cravings. Finally, I got a Jillian Michaels CD (Biggest Loser) called "No more Trouble Zones", which is a low impact, high results 40 minute workout program I did 3 times a week. Below is the rest of what I did, and I have not stopped following this diet, by the way!
1) Boil 6-12 eggs at a time and peel right away. Then I put 2 each in ziploc snack bags (Got those at the dollar store);
2) Buy 1 bunch of bananas per week;
3) Buy full bars (peanut butter ones have less sugar and carbs) at Costco or on Dr. Snyder's website http://www.fullbar.com;
4) Have a refillable water bottle;
5) Jillian Michaels "No More Trouble Zones" CD (Costco has all 3 of her CD's);
6) Cut out all sugar and get Republic of Tea "Get Lost" tea.
Eat one full bar in the morning and as instructed drink water 1/2 hour before eating anything. Then eat banana or eggs. Try to eat only one. When hungry again, eat eggs (they last longer through the day).
At dinner time, eat another full bar 1/2 hour before serving. Then eat 1/2 of usual portion, but do not finish after you feel full. Do your best to stay away from sugar. Drink one cup of the tea with a splenda. This will literally kill your sugar craving. You can drink at night or anytime you crave sugar.
Exercise when you can. Try to do it 3 times a week. I do it at night as I get fatigued and want to crash. Erin bought the Wii Fit Plus and we are going to make the basement into an exercise/sewing room. Try to make your own quiet place so you can relax afterward and do the CD undisturbed. Night time might be great for mothers as the kids are in bed.
Later you can incorporate other foods. I have two slices of the highest grain and protein bread per day as a snack to help with staying regular. There is a bread at Costco but the name escapes me right now. I also eat whole grain pasta and I eat smaller amounts of it with a protein - sometimes the flavored tofu from Whole Foods or ground turkey. I eat edamame and shrimp wanton soup for dinner and maybe a veggie potsticker or two. The key is to watch the white, starchy carbs and do not let them in your house if you can help it. Another great dinner is black bean or lentil soup with 1 slice of whole grain bread. When you start to see results, you will start to make your own diet that works for you.
Finally, exercise. It is important for your health, MS, and weight loss. Warm up with a short yoga CD, which you can get at Barnes and Noble or other book stores. I love yoga; it is like my own private Idaho at home!
Don't forget, check with your doctor. The Jillian Michaels is low impact mat work similar to yoga. It took me a month to finish it. Now I can do it, but some parts I sit it out. Talk to the doctor about the diet as well. it is a balance of protein and complex carbs, which you need for energy. Bananas are great for the heart, and be sure to add a small amount of sodium to your diet as well.
This program took me a year to get where I am. All I wanted to lose was 30 lbs and I have lost 60. I now weigh 117, have better balance and have not fallen or tripped in a year. After you check with your doctor, start easy and work yourself up to the level you are comfortable with - don't quit - you will love the results!
Good luck and please send any questions to my e-mail or you may comment and I will get the e-mail that way.
So I come to Colorado to my best friends' home and she is a chef. Food is included in rent. She has a weight issue, and is struggling with many diets, but I change my diet to hers, which is very sugary, starchy and fatty. My weight went up and down, until finally she went on the Atkins Diet, and so did I.
Well I lost about 20 lbs, but I was already almost 170, so I kept going. She only lost 10 pounds and gave up, but I continued to eat complex carbs and protein.
Then I hit a wall. I was not exercising, and right about that time I got diagnosed and I was so depressed, even though I had lost 4 inches on my waist, I went up to 180. I stayed there and started tripping all the time, losing my balance and twisting my ankles. Then my GP looked me straight in the eyes and said, "Seriously, if you do not lose weight, you are only going to keep tripping and falling. Your body has to hold that weight and do many other movements which are complicated and with limb weakness, your feet drop and legs can give out on you."
So I went at it again, especially after falling so hard, what they call a drop fall, that I had no idea I had fallen (This is why I got Oliver), and I twisted my left ankle so bad it took months of physical therapy to get it to heal.
So, I switched back to complex carbs - all breads, pastas, starches of any kind are whole grain. I started eating and drinking fiber and acidophilus in my coffee and tea. I cut out sugar COMPLETELY and bought Republic of Tea's "Get Lost", which curbs sugar cravings. Finally, I got a Jillian Michaels CD (Biggest Loser) called "No more Trouble Zones", which is a low impact, high results 40 minute workout program I did 3 times a week. Below is the rest of what I did, and I have not stopped following this diet, by the way!
1) Boil 6-12 eggs at a time and peel right away. Then I put 2 each in ziploc snack bags (Got those at the dollar store);
2) Buy 1 bunch of bananas per week;
3) Buy full bars (peanut butter ones have less sugar and carbs) at Costco or on Dr. Snyder's website http://www.fullbar.com;
4) Have a refillable water bottle;
5) Jillian Michaels "No More Trouble Zones" CD (Costco has all 3 of her CD's);
6) Cut out all sugar and get Republic of Tea "Get Lost" tea.
Eat one full bar in the morning and as instructed drink water 1/2 hour before eating anything. Then eat banana or eggs. Try to eat only one. When hungry again, eat eggs (they last longer through the day).
At dinner time, eat another full bar 1/2 hour before serving. Then eat 1/2 of usual portion, but do not finish after you feel full. Do your best to stay away from sugar. Drink one cup of the tea with a splenda. This will literally kill your sugar craving. You can drink at night or anytime you crave sugar.
Exercise when you can. Try to do it 3 times a week. I do it at night as I get fatigued and want to crash. Erin bought the Wii Fit Plus and we are going to make the basement into an exercise/sewing room. Try to make your own quiet place so you can relax afterward and do the CD undisturbed. Night time might be great for mothers as the kids are in bed.
Later you can incorporate other foods. I have two slices of the highest grain and protein bread per day as a snack to help with staying regular. There is a bread at Costco but the name escapes me right now. I also eat whole grain pasta and I eat smaller amounts of it with a protein - sometimes the flavored tofu from Whole Foods or ground turkey. I eat edamame and shrimp wanton soup for dinner and maybe a veggie potsticker or two. The key is to watch the white, starchy carbs and do not let them in your house if you can help it. Another great dinner is black bean or lentil soup with 1 slice of whole grain bread. When you start to see results, you will start to make your own diet that works for you.
Finally, exercise. It is important for your health, MS, and weight loss. Warm up with a short yoga CD, which you can get at Barnes and Noble or other book stores. I love yoga; it is like my own private Idaho at home!
Don't forget, check with your doctor. The Jillian Michaels is low impact mat work similar to yoga. It took me a month to finish it. Now I can do it, but some parts I sit it out. Talk to the doctor about the diet as well. it is a balance of protein and complex carbs, which you need for energy. Bananas are great for the heart, and be sure to add a small amount of sodium to your diet as well.
This program took me a year to get where I am. All I wanted to lose was 30 lbs and I have lost 60. I now weigh 117, have better balance and have not fallen or tripped in a year. After you check with your doctor, start easy and work yourself up to the level you are comfortable with - don't quit - you will love the results!
Good luck and please send any questions to my e-mail or you may comment and I will get the e-mail that way.
Friday, February 26, 2010
The service dog
Having a therapy dog has changed my life. There are 2 kinds of working dogs: Therapy and working dog. The working dog is trained to do a host of services. Help the blind, people in wheelchairs, etc.
The therapy dog is an RX dog prescribed by your doctor. When I flew to Florida all I needed were the letter of prescription and his updated health records. My therapy dog is named Oliver. He is well trained and helps me feel safe if I fall and when I go places alone.
Oliver is a chiuaua. He was given to me as a puppy and I have trained him for this since. I get many comments on him because he is very pretty (fawn) and small. Most people do not know you can use small dogs as service dogs.
Before My diagnosis, I volunteered for the animal rescue league in Denver. I have 2 cats in the house and at the time there were 3. Since my roomie had the 2 cats and I had 1, she wanted no more animals, so I volunteered for the dog behavioral department.
I started out walking dogs. Then I could not handle the big dogs, so I would only walk the little ones. I was exhausted after 2 hours, I did not know why at the time. I then took a break and have not gone back since my diagnosis.
I learned that I never would have been able to handle a large dog as a service dog. Sometimes Oliver wears me out as he is still a dog and still does dog things. Not often, but he can get tired and I have to carry him. Then I can only do it ten minutes at a time.
I have severe anxiety as well, and he helps tremendously with that. He also helps keep me busy. After all, he is 1.5 years old now and very active. My room mate loves and adores him and plays with him often. She feels sometimes I neglect him, but unfortunately, I get fatigued and can't play with him. He is well fed, has dog insurance with the vet and I train him constantly. She does not train, feed or walk him, but I am so grateful she plays with him!
This also keeps he and I in a "master-servant" relationship. When he sees her, he gets excited whereas when he sees me he is on guard. He knows I am the stern trainer and she is the fun, playmate. My concern is that he would want to play at a time when I needed him most, such as if I fall.
Because he is certified he can go anywhere with me. I have to stave people off as he is little and cute, and some never ask if they can pet him. But the fact that he is a chiuaua and a service dog just makes them so curious and respectful of him. Imagine, seeing chiuaua's in this different light? Not the yappy, nippy dogs they are claimed to be? Oliver is not that kind of dog. He growls sometimes and barks, but it is rare, and I nip it in the but right there.
Also, as he is so small, I had to make him a vest. I did costume design when I was in my 20's. Then I ordered the patches from sitstay.com, sewed them on, and when I put the vest on, he knows it is time to work.
There are other ways to get service dogs - you can go through a service dog specialty center which could be thousands or train your own dog with certified professional trainer. For a therapy dog they must have enough training to understand and obey your commands and not use the bathroom while inside buildings. I use public transportation a lot and walk Oliver when we are outside and, of course, bring bags and treats (bully bones keep them busy for a long time).
Whatever dog you choose or wherever you chose to train it be sure it is a dog you can handle. I am fully ambulatory and can walk a dog, but my limbs are week, so I needed a smaller dog. He is perfect for me. He also lives longer than any other breed; up to 30 years! So do your research, leave any outside information and myths you have heard about any breed and do what works for you!
Good luck and happy dog hunting!
The therapy dog is an RX dog prescribed by your doctor. When I flew to Florida all I needed were the letter of prescription and his updated health records. My therapy dog is named Oliver. He is well trained and helps me feel safe if I fall and when I go places alone.
Oliver is a chiuaua. He was given to me as a puppy and I have trained him for this since. I get many comments on him because he is very pretty (fawn) and small. Most people do not know you can use small dogs as service dogs.
Before My diagnosis, I volunteered for the animal rescue league in Denver. I have 2 cats in the house and at the time there were 3. Since my roomie had the 2 cats and I had 1, she wanted no more animals, so I volunteered for the dog behavioral department.
I started out walking dogs. Then I could not handle the big dogs, so I would only walk the little ones. I was exhausted after 2 hours, I did not know why at the time. I then took a break and have not gone back since my diagnosis.
I learned that I never would have been able to handle a large dog as a service dog. Sometimes Oliver wears me out as he is still a dog and still does dog things. Not often, but he can get tired and I have to carry him. Then I can only do it ten minutes at a time.
I have severe anxiety as well, and he helps tremendously with that. He also helps keep me busy. After all, he is 1.5 years old now and very active. My room mate loves and adores him and plays with him often. She feels sometimes I neglect him, but unfortunately, I get fatigued and can't play with him. He is well fed, has dog insurance with the vet and I train him constantly. She does not train, feed or walk him, but I am so grateful she plays with him!
This also keeps he and I in a "master-servant" relationship. When he sees her, he gets excited whereas when he sees me he is on guard. He knows I am the stern trainer and she is the fun, playmate. My concern is that he would want to play at a time when I needed him most, such as if I fall.
Because he is certified he can go anywhere with me. I have to stave people off as he is little and cute, and some never ask if they can pet him. But the fact that he is a chiuaua and a service dog just makes them so curious and respectful of him. Imagine, seeing chiuaua's in this different light? Not the yappy, nippy dogs they are claimed to be? Oliver is not that kind of dog. He growls sometimes and barks, but it is rare, and I nip it in the but right there.
Also, as he is so small, I had to make him a vest. I did costume design when I was in my 20's. Then I ordered the patches from sitstay.com, sewed them on, and when I put the vest on, he knows it is time to work.
There are other ways to get service dogs - you can go through a service dog specialty center which could be thousands or train your own dog with certified professional trainer. For a therapy dog they must have enough training to understand and obey your commands and not use the bathroom while inside buildings. I use public transportation a lot and walk Oliver when we are outside and, of course, bring bags and treats (bully bones keep them busy for a long time).
Whatever dog you choose or wherever you chose to train it be sure it is a dog you can handle. I am fully ambulatory and can walk a dog, but my limbs are week, so I needed a smaller dog. He is perfect for me. He also lives longer than any other breed; up to 30 years! So do your research, leave any outside information and myths you have heard about any breed and do what works for you!
Good luck and happy dog hunting!
Meds and how they interact
As I mentioned earlier, I take adderol for fatigue. I also take Paxil. It works great for anxiety and fatigue, and all the doctors support it. Dr. Corboy caught the fact that I have anxiety when I told him I take Xanax for plane rides. He would not give me Xanax to sleep, he said Xanax is for plane rides only and other times I have severe anxiety, or situations which may cause me severe anxiety; and that I needed to learn self hypnosis and other means. I did not even use it for the breast sonogram which I was beside myself about, or the cardiologist visit below.
Later I complained to my GP I was awakened frequently at night due to spasticity in my arms and legs, then I was unable to sleep afterward. She prescribed Clonazepam which is is for my spasticity in my arms and legs that used to torture me at night. Spasticity is when your
muscles stiffen and feel like you have a "charlie horse". It is very painful. Now I sleep well. Gabapentin also makes you feel relaxed, but it is for nerve pain and seizures, and I take it as well.
So at this time I am taking 100mg Gabapentin, Clonazepam and drinking 5-7 espresso type beverages in the morning; then a shot of Copaxone at night.
As I mentioned, I went home to Florida for Christmas and was having pretty frequent heart palpitations. I was there for almost a month and when I got back, I immediately went to my GP who did an echo and said my rhythm had changed and she ordered a halter and I set an appointment with the cardiologist for a week after I turned the halter in.
I went to the cardiologist and had the entire workup done - echo, sonogram (by a strapping young man of 32 who was feeling my breasts (for the sonogram) but it felt great!!! Silver lining - when I saw that handsome young man who was to do it, all anxiety went away : ). Plus they let me have Oliver, which is really what he is for - doggy Xanax. He now has his vest and certifications, so he can go with me anywhere. He was so great; when they put the IV in (which I have tons of anxiety about), he knew to come up and lay his head on my shoulder, look me in the eyes while I petted him.
Then I saw the cardiologist, who was knowledgeable in everything from how all the drugs I was taking interact (even how they effect sexual function!!) Here is what I learned (this was before I was prescribed adderol):
1) Copaxone causes heart palpitations. What!!! It is the best on the market. She asked if I wanted to change, I flatly said"not a chance!"
2) Coffee causes palpitations and can worsen if combined with any other drug that causes it. Right on - I knew this as I smoked for many years and thought it was the smoking. It was both. Now, I had a 15 year career in restaurant management, part of which I spent working for Seattle's Best Coffee and Starbucks. I also lived in Seattle for 5 years, and coffee was more prized than alcohol. Believe it baby! I was drinking it 24-7 and my tolerance is the highest possible. I now carry the Via with me and am never without. She asked me to give up coffee. Uh, another no. Can you do half and half? Yes. So I get half regular and half decaf ground into a pound and I bought decaf Via and do half and half with those.
3) Adderol, which was prescribed that day and she spoke with my GP about, she told me would give me the most palpitations. She told me Provigil was non-narcotic and worked well. I agreed, until I found out the price. So, here is what I did.
I went to my GP and asked her if I could take the 100mg of Gabapentin, 1 mg of Clonazepam, drink the half and half coffee and asked how it would interact. She said it was fine, and that lots of people get agitated by adderol and the Clonazepam will offset that.
So now I have energy and stamina and no agitation, along with no pain thanks to the Gabapentin. As soon as I get a job or SSDI I will switch to Provigil as the long term effects of adderol may be bad. After all, it is an amphetamine salt!
One more suggestion on drugs prescribed. When you go to your pharmacy, ask for a consult. Especially when getting a new drug. Ask them to look over your list on the computer and tell you how they may all interact. That is what they are there for. Pharmacists know better than anyone how these drugs interact as they make them.
Good luck and have a wonderfilled weekend!
Cristen
Fatigue *sigh*
Good afternoon, fellow MS er's and family members of the same:
Before I was diagnosed I used to be known to sigh quite frequently, and most people thought I was bored or being rude. Now I know why.
Before I was diagnosed I used to be known to sigh quite frequently, and most people thought I was bored or being rude. Now I know why.
I am sure after your diagnosis you got all those "aha" moments when you remembered all the symptoms in a vacuum that got diagnosed as other issues. I got diagnosed with migraines for blindness in my right eye in 2003, stress for right side numbness in 1996, severe emotional problems for emotional lability, anxiety for bladder urgency, and the list goes on.
I have the worst fatigue known to MS called "lassitude fatigue". Basically, you are sleepy (you feel drugged) and can fall asleep anywhere. Until recently, I had no idea I had this. I thought fatigue was muscle related. There is the type that makes you feel drained, which I also get, and you want to fall over like a tree, but I always thought it was my menses that caused it. I also have a "short circuiting " fatigue that causes limb weakness. This is why I got a small dog as a service dog; I am unable to handle dogs over 10 lbs - and working out does not make the limb stronger, but helps with balance and falling.
Here are a few examples: I went to Florida for Christmas. I stayed at my father's and we got up and ready around noon on Christmas day to go to Palm Beach to meet with mother and one of my brothers. The trip took an hour and my father and I were talking and he looked over and I was asleep. Concerned, he said he allowed me to sleep till noon. I told him I was exhausted.
Throughout the day and night, I was fighting my eyelids, even with caffeine (which I drank 5-7 cups of espresso type coffee per day). We went home, I slept, and the next day felt well rested.
I took the LSAT on February 5th. With coffee I fell asleep. I would wake up when my pencil fell. I even went to bubble in answers and would fall asleep as my pencil hit the paper. Lucky for me the test was administered incorrectly, so I get another shot.
I went to the nurse practitioner, who I have already gleamed about her awesomeness, and she said I had a few choices, but we started on adderol. 20 mg did not do the trick, but I have been doing better with 30-40. The irony is that she told me not to take it after 1 pm and I do, and still fall asleep by 10 pm!
There are other treatments as well. Pilots take Provigil, but when you have only generic drugs on your insurance plan, it is a very expensive drug. From what I hear, it is great, though.
The scoop
Non-stimulant meds:
Symmetrel - has anti-viral effects and may turn skin blue;
Antidepressants for those who may or may not be depressed: Prozac, Paxil (which I take for fatigue and anxiety) and Zoloft (highly recommended by my docs);
Moldafini (Provigil): Used by pilots on long flights, non narcotic but VERY expensive. It is a neurochemical which has a unique mode of action shown to decrease fatigue and is the most popularly used.
Stimulant meds:
Can be habit forming, which you would need to speak with your doc about:
Adderol or generically Amphetamine salts combo:
Used mainly for focus in ADD in teens and adults;
Cylert: aka Pemoline;
Ritalin: Used for ADD in younger children;
Dexadrine: aka Dextroamphetamine.
Again, these should be used with caution as they can be habit forming. My doctors advise rest (well timed naps), antidepressant meds and stimulants as needed.
I have learned ways to conserve energy by taking breaks and doing NOTHING, meditation, yoga and low impact exercise.
Also, anytime you see your nurse practitioner, remeber to ask her for books and other materials on MS. They usually get these to give to patients as support materials. Copaxone offers a doctor visit checklist (as well as a travel one) to bring to the doc. They will often take it from me and read down the list and answer line by line. You can use it to document falls, fatigue or any other symptoms that are bothersome.
Good luck and remember to visit the sites above; they have an avalanche of info just for you!
Cristen
My docs and resources for you
Good morning fellow MS'ers;
I was fortunate enough to get into the University of Colorado Neurosciences team of doctors after my initial diagnosis. These folks really know their stuff, and head up all research, travel around the country and are professors (it is a teaching hospital). If you get with any Neurosciences team, find a teaching hospital in your area. You will not regret it.
This is a handy site for you to read up and coming everything related to MS. Both my doctor (John R. Corboy) and Vollmer established this center. It has resources such as attorneys to help patients with paperwork and tests to get SSDI for clients, social worker Pat Daly for counseling or referrals, newsletters, and long term and life insurance professionals who work with MS patients only. All at no charge.
Click on the article by Pat Daly, LCSW, Summer 2009 (PDF) "It's Just the Tip of the Iceberg: A New Paradigm for MS" where she interviews one of my doctors. It gives you the latest up to date studies on MS by my team of doctors. Dr. Vollmer explains that remission is not really remission; your disease just becomes invisible again.
As for my symptoms, which are quite invisible if you look at my pictures, I have the following: Lassiter fatigue (I fall asleep anywhere as if I have not slept in days, worst type); Bowel dysfunction (I cannot have a movement without a laxative but I take fiber daily as well as acidophilus); Bladder dysfunction (urgency and unable to empty bladder); severe anxiety; severe nerve pain headaches and backaches; left leg weakness (sometimes I trip); upper arm fatigue in both arms; and before I knew I had MS I had a symptom called emotional lability, which you can read about here:
Which by the way is another great tool for MSer's. You fill out all the information and print a doctor visit sheet with all medications, symptoms, questions and it shows your progression so you can follow it. I love it.
I feel blessed to have these doctors as my own. I now see all my doctors there; from cardiologists to mammography to my general practitioner. My GP did an internship with MS patients and know exactly what I need and can understand where I am coming from. They truly are amazing.
I will stop here as I know we have difficulties sitting and reading long diatribes. I will do my next posting on fatigue, management and drugs that can help.
Cristen
Thursday, February 25, 2010
One hurdle over, another to jump
MS is quite the disease. It reminds me of those rubber trees in Florida that grew and took over your yard, Eventually, if you did not remove them, the roots came up through your house and cause foundation problems.
That's what MS does. It gets into every part of your life and shakes your foundation. What used to be small challenges become large ones and the large ones seem larger.
As previously mentioned, I have a case against my former employer for discrimination. The blessing is that I found an attorney that will represent me on a contingency basis. The percentages are different based on if we just go to mediation or court. Court is expensive. Mediation would be ordered if the commission finds in my favor; then he has to settle with me.
This past week I got an appeal to my unemployment rights from him.Because I volunteered with the legal rights here in Denver regularly, I had an attorney in place. My old boss had filed a late appeal, so I knew it was a possibility; just did not want it to get granted. So when I got the news in the mail, it rattled my cage. After I swore and wished him dead, I calmed down. I decided that because he admitted to touching me unwantingly (civil name for assault), I would call the DA to see if I could get the case re-opened based on the transcript, the judge's findings and orders and the record.
In his rebuttal to my award, he stated repeatedly that I quit the job. But I gave him his keys back based on an accommodation I asked for weeks before, and told him that. He still insists that I quit; and insisted as he assaulted me out the door. We had a long standing stare down about who would be fired or quit first, and I was not giving in. I would not quit because I had a disability that did not affect my job performance.
I had an interesting discussion with the DA.I was never quite sure why they told me I could be charged with trespassing. We talked for a few minutes and she said the case was ultimately dropped and closed. I then asked her what reasoning she relied on that I trespassed when I was in a federally insured building after hours and he had to let me out as I relinquished my keys. She told me that all the employees and the attorney told her I was fired and refused to leave the building. I thanked her and hung up.
The man is a jackass. When I get the offense report, his quitting theory will be blown out of the water, and he may get cited for lying to 3 officers of the court. The short of it is, I am happy, relieved and less stressed knowing he lied.
I really do have to trust the universe more than I do. It really does take care of me.
That's what MS does. It gets into every part of your life and shakes your foundation. What used to be small challenges become large ones and the large ones seem larger.
As previously mentioned, I have a case against my former employer for discrimination. The blessing is that I found an attorney that will represent me on a contingency basis. The percentages are different based on if we just go to mediation or court. Court is expensive. Mediation would be ordered if the commission finds in my favor; then he has to settle with me.
This past week I got an appeal to my unemployment rights from him.Because I volunteered with the legal rights here in Denver regularly, I had an attorney in place. My old boss had filed a late appeal, so I knew it was a possibility; just did not want it to get granted. So when I got the news in the mail, it rattled my cage. After I swore and wished him dead, I calmed down. I decided that because he admitted to touching me unwantingly (civil name for assault), I would call the DA to see if I could get the case re-opened based on the transcript, the judge's findings and orders and the record.
In his rebuttal to my award, he stated repeatedly that I quit the job. But I gave him his keys back based on an accommodation I asked for weeks before, and told him that. He still insists that I quit; and insisted as he assaulted me out the door. We had a long standing stare down about who would be fired or quit first, and I was not giving in. I would not quit because I had a disability that did not affect my job performance.
I had an interesting discussion with the DA.I was never quite sure why they told me I could be charged with trespassing. We talked for a few minutes and she said the case was ultimately dropped and closed. I then asked her what reasoning she relied on that I trespassed when I was in a federally insured building after hours and he had to let me out as I relinquished my keys. She told me that all the employees and the attorney told her I was fired and refused to leave the building. I thanked her and hung up.
The man is a jackass. When I get the offense report, his quitting theory will be blown out of the water, and he may get cited for lying to 3 officers of the court. The short of it is, I am happy, relieved and less stressed knowing he lied.
I really do have to trust the universe more than I do. It really does take care of me.
Monday, February 22, 2010
Your legal rights and MS
The last post has brought me to this subject as it is just as important as the medication you take every day and your overall general health.
Legal rights concern insurance issues, handling debt, disability (SSDI), dealing with taxes, working with doctors and lawyers, medical directives, your rights and responsibilities, family law, job discrimination, property, powers, and personal choice. Whew!
Since the last post was about employment discrimination against me, that is where I will start. By the way, I will not bore you with an entire string of these legal bloggings; I will throw them in as needed when I deal with them in my life. Since I am also a paralegal and have worked in this area as well as the other areas I will discuss, I had less difficulty understanding my legal rights.
The first thing to remember is that it is your responsibility to check with your local civil rights commission to find out what your rights are. For example, in my job, I had to file a complaint with the local civil rights chapter because my employer had under 15 employees. If your employer has 15 or more employees, then you file with the local chapter of the EEOC, which allows you more retribution. In my state, I am only entitled to back pay.
After you find that out, you must decide if you need any accommodations and what they are. The accommodations cannot be a burden to the employer's business. For example, adding special equipment for you only is a burden. Adding equipment that is required by law is not.
You have no legal duty to disclose your disability to your employer unless it would make you unable to perform the job satisfactorily. If you want to be a stock boy at a supermarket and cannot lift over 10 lbs and the job requires you be able to lift 50, the employer can turn you down or terminate you.
In my case, I was able to perform the job as it required reading, writing, research, docketing and calendaring, as well as customer interaction. One fine day, I parked in a handicapped spot and the boss noticed. He asked why I was parked there. I told him I had no legal duty to disclose it to him. He asked if it was a fake placard. I repeated myself. He then told me I could not be trusted. That type of behavior is illegal. I decided to tell him I had MS. He then told me I did not look like I had it, he knew people that have it and They were in bad shape.
I then decided to tell the three other employees there and one said she had daughter who had it, which made me feel more at ease. It seemed everyone was fine with it, until the attorney I was working for got so overloaded in cases and became angry with me all the time for directing him on the cases I needed attended to.
The rest of my case is below. I won't repeat it here. My boss was very volatile and was reminded of it often. When I finally left, I was assaulted out of the door, after all the hard work and hours I put in that were extra. Besides filing a restraining order and assault charge against him, I also filed a charge with the local civil rights commission.
I found out a few other things as well. I got an attorney with legal aid for his unemployment appeal (he claims I quit because I gave him his keys and told him I was working 9-5 only and as we were in a federally insured bank building that opened and closed 9-6). He clearly fired me and had asked me to quit several times due to my MS as he thought it "beauty parlor bullshit", he did not have time for it and it was a "bunch of "hoo haa". Also illegal.
He then demanded medical records in front of employees, had discussions with me that were confidential in front of other employees (ADA says they must be manager or administrator of the business), made fun of me and told other employees that I had MS. Illegal. He also told me I needed to quit based on my MS as he felt it was disrupting his firm.
The accomodations I asked for were the following: To give me a few minutes to process his requests (I worked up to 30 cases at a time), although any reasonable person would have asked for that; access to the elevator as I could not climb stairs; and the biggie - no more working over 8 hours a day.
These were all more than reasonable, which he met with disdain and the best ability I have ever seen to be as unreasonable as possible.
So, moral of the story is this: check with your local civil rights division and ask what your rights are at work;
make sure any accomodations you ask for are reasonable and needed;
and if you have an experience similar to mind, you do not go to the court to file charges, you go to the commission and exhaust your administrative remedies first. Be sure to document everything, keep e-mails and any other evidence you may have to file with the commission because they are generally overloaded. After filing, call and get your investigator's name and number (e-mail is best) so you can stay current. You do not need an attorney unless the commission finds in your favor and you go to conciliation. In most states you must file within 180 days of the discrimination and the commission has 270 days to investigate. After that time, you get a right to sue letter and you can file in court. However, court is long and costly so it is best to see if the commission can help you get the result you need.
That's it for now, may yo have a wonderfilled day!
Legal rights concern insurance issues, handling debt, disability (SSDI), dealing with taxes, working with doctors and lawyers, medical directives, your rights and responsibilities, family law, job discrimination, property, powers, and personal choice. Whew!
Since the last post was about employment discrimination against me, that is where I will start. By the way, I will not bore you with an entire string of these legal bloggings; I will throw them in as needed when I deal with them in my life. Since I am also a paralegal and have worked in this area as well as the other areas I will discuss, I had less difficulty understanding my legal rights.
The first thing to remember is that it is your responsibility to check with your local civil rights commission to find out what your rights are. For example, in my job, I had to file a complaint with the local civil rights chapter because my employer had under 15 employees. If your employer has 15 or more employees, then you file with the local chapter of the EEOC, which allows you more retribution. In my state, I am only entitled to back pay.
After you find that out, you must decide if you need any accommodations and what they are. The accommodations cannot be a burden to the employer's business. For example, adding special equipment for you only is a burden. Adding equipment that is required by law is not.
You have no legal duty to disclose your disability to your employer unless it would make you unable to perform the job satisfactorily. If you want to be a stock boy at a supermarket and cannot lift over 10 lbs and the job requires you be able to lift 50, the employer can turn you down or terminate you.
In my case, I was able to perform the job as it required reading, writing, research, docketing and calendaring, as well as customer interaction. One fine day, I parked in a handicapped spot and the boss noticed. He asked why I was parked there. I told him I had no legal duty to disclose it to him. He asked if it was a fake placard. I repeated myself. He then told me I could not be trusted. That type of behavior is illegal. I decided to tell him I had MS. He then told me I did not look like I had it, he knew people that have it and They were in bad shape.
I then decided to tell the three other employees there and one said she had daughter who had it, which made me feel more at ease. It seemed everyone was fine with it, until the attorney I was working for got so overloaded in cases and became angry with me all the time for directing him on the cases I needed attended to.
The rest of my case is below. I won't repeat it here. My boss was very volatile and was reminded of it often. When I finally left, I was assaulted out of the door, after all the hard work and hours I put in that were extra. Besides filing a restraining order and assault charge against him, I also filed a charge with the local civil rights commission.
I found out a few other things as well. I got an attorney with legal aid for his unemployment appeal (he claims I quit because I gave him his keys and told him I was working 9-5 only and as we were in a federally insured bank building that opened and closed 9-6). He clearly fired me and had asked me to quit several times due to my MS as he thought it "beauty parlor bullshit", he did not have time for it and it was a "bunch of "hoo haa". Also illegal.
He then demanded medical records in front of employees, had discussions with me that were confidential in front of other employees (ADA says they must be manager or administrator of the business), made fun of me and told other employees that I had MS. Illegal. He also told me I needed to quit based on my MS as he felt it was disrupting his firm.
The accomodations I asked for were the following: To give me a few minutes to process his requests (I worked up to 30 cases at a time), although any reasonable person would have asked for that; access to the elevator as I could not climb stairs; and the biggie - no more working over 8 hours a day.
These were all more than reasonable, which he met with disdain and the best ability I have ever seen to be as unreasonable as possible.
So, moral of the story is this: check with your local civil rights division and ask what your rights are at work;
make sure any accomodations you ask for are reasonable and needed;
and if you have an experience similar to mind, you do not go to the court to file charges, you go to the commission and exhaust your administrative remedies first. Be sure to document everything, keep e-mails and any other evidence you may have to file with the commission because they are generally overloaded. After filing, call and get your investigator's name and number (e-mail is best) so you can stay current. You do not need an attorney unless the commission finds in your favor and you go to conciliation. In most states you must file within 180 days of the discrimination and the commission has 270 days to investigate. After that time, you get a right to sue letter and you can file in court. However, court is long and costly so it is best to see if the commission can help you get the result you need.
That's it for now, may yo have a wonderfilled day!
Saturday, February 20, 2010
Wherever I go, there I am...and I am a spiritual being having a human experience.
I have to remember this every time I get down about my MS. What is my purpose? Why am I here? I still have not figured that out, but I desperately want to.
The past month and a half have been eye openers for me. I get the help I need when I ask for it, however I did not expect on thing. And it has twisted my life so badly, I am not sure what to do.
When I worked for a certain employer, he was very insensitive to my MS. That is being mild. Eventually, I left him at his request, as he assaulted me out the door. During the time I worked for him, I asked fore certain accommodations. Before I did so I consulted with an employment attorney in the county and of course read the rules and statutes thoroughly myself. The more I asked for, the more agitated he got. it was "beauty parlor bullshit" and "hoo haa" to him. He told me I never gave him any diagnosis to prove it; and I of course had given it to the person who held herself out to be a manager or administrator of his firm. She denied it but then found it.
I asked for a few things. They were reasonable and were not a burden on his business. I am a paralegal (just took the LSAT). In this particular attorney's practice, I managed all of his family law cases (18-25 cases), his civil cases (3-4) and criminal cases (3-4). in a usual week, he also had 5-7 bankruptcy cases he showed in court for and was constantly on the phone with "money calls" (potentially new cases). Potentially new cases took precedence over current cases. He was a very difficult attorney to work for for many reasons, and this was one of many.
In March I was hired by him to run his family law cases. I was told to work 9-5 or 10-6. The building was a federal bank building and opened at 9 and closed at 6, so I had a choice of the two. The job was almost perfect; I lived 3 blocks away and I was able to bring my cat. That did not work out well; she often got frightened by all the traffic in the office, so I stopped bringing her.
At the time he had over 20 many of which were neglected and some he did not show for because they were not calendared in the previous months before that. His favorite assistant, Jan, tried to tell me what to do, but she was so incompetent I entertained her words only. For example, she told me that one particular case was waiting for something on the plaintiff side. She advised me to put it away as we had other matters. A few weeks later the client wanted to know where the attorney was; they had permanent orders that day. I never spoke to another person about family law again.
This particular attorney also had an obsession with making fun of people. the week after he hired me he asked why I was parked in a handicapped spot. I told him by law I did not have to disclose it. He immediately told me he could not trust me. I decided to tell him I have MS. I then told the 3 other employees in the office. I knew if I did not, he would. Why? When he was looking for a bankruptcy assistant, the one he wanted was great, he told us, except the former employer disclosed she had a disability. Jan then found out what it was and told the entire office. In secret, one by one, of course, and I would not let that happen.
So, when he was furnished with the diagnosis I gave his "administrator", he then told me he wanted other records pertaining to my disability. The first accommodation I asked for was that he give me 5-6 minutes to process any requests. He said he would do it, but never did. The second was that I was given keys to the building so I could come and go when there was work to be done. Often I arrived at 7 am and left at 9 pm or later. I worked for 5 attorneys and handled twice the work and never left after 6 pm. I wanted to go back to working 8 hours, like the rest of the firm. He was always behind on my cases and it held me back. Then we would file last minute and that was a stressful drag.
He used to yell at me a lot; calling me stupid, I did not listen, and that I depended on him too much. He wanted me to sign pleadings and motions for him. Yet that was illegal, and would hurt him more than me but I was unwilling to do it. He hated family law, therefore hated me and so did the firm. I was a distraction, although I had a heavy caseload and pertinent documents that needed review and his signature as approval.
In August we began to have personality conflicts. Here I am watching his back and he just had no interest. I was not a lawyer, yet I soon learned the people who malpracticed law for him became his favorites, even though I re-wrote his rep and fee agreements, explained the reasoning for COLTAF accounts and had clients come in and either sign rep and fee agreements or re-do them all together to keep him out of trouble.
Moral: I got a cognitive test, aka neuropsychological test. Not only was it a new test, it was something I was billed over 3,250.00 for and it was the one thing I never thought it would be: a bomb. It was all sorts of test rolled into one, including an IQ test and you did it over a 2 day period. I had not taken any of the tests in 30 years, making it suspect to me.
Also, read the statutes in your state or consult with an employment lawyer. Most will speak to you for free, and if not, call your county's legal aid.
I left the firm before I was able to give it to him, however, when my father applied for health insurance with a rider that you draw on (the death benefit) no one would even consider me. Further, the doctor who administered the test, refused to sign an accommodations letter for the LSAT or anyone, even though that was the reason I got it!! Why pay for it, then?
Be careful about the tests you take. I am currently unemployed and on unemployment. I have taken the LSAT for law school, but was denied accommodations on that one test. My hope is that the health care bill gets passed and I can get the rider and life insurance. If not, all I have is state help. Better than nothing, it falls short of many of the costs that I may encounter in life.
As for my life's path, my purpose, it is still yet to be revealed. I will post my ideas next.
That's it for now, may every day find you happy and healthy! And as my father says - look up!
Monday, February 15, 2010
Deservability
My issue has always been deservability. I just don't feel you deserve the very best in life. I have been reading "You Can Heal Your Life" by Louise Hays and listening to her 101 Affirmations on CD. They have done wonders for me, especially after all I am going through with my health. Another thing - I weighed 160 last year and brought myself to 118 by refusing to be overweight. MSer's have bad balance, therefore become weeble wobbles if they are overweight. I did something amazing. The prior year Erin and I went on the Atkins diet. I did well, even though I could not eat dairy or meat. However I hit a wall since I did not exercise. So I ate the complex carbs and maintained the weight until I got back on sugar. I fell twice and hurt myself badly, then twisted both my ankles. I looked horrible. One ankle is still healing.
One night I watched the Biggest Loser and how those huge people get up there half naked and without pride are willing to do what it takes to change their lives. So I stopped sugar. Then I got back on fiber, acidophilus, and complex carbs. Then I bought Jillian Anderson's DVD, "No More Trouble Zones." I did it 3 days a week and suddenly here I am, a size 2 again. I feel great. I never fall. I feel better about myself. And as a bonus, I look sexy as hell!! I got the DVD at Costco, then I got 2 others and Erin bought it on Wii Fit Plus for me for Christmas.
Then a magical thing happened. Erin started to exercise. She started to lose weight. She started to feel better. Thursday she got lap band surgery, and she is recovering. I feel so inspired, but I am the inspire-er!
Yes, I took the test. It is called the Law School Admissions Test, hence, LSAT. I had a hard time, but my psychic friend Dee told me I did better than I will expect. Let's hope so.I get the score on March 1. Say a prayer on that day. Law school is all I want. I don't even care about a man as much as that. If I do not do well, I will take it again. The school I am applying to in Denver does not average the scores. I also have the best Neuro-team here and get all sorts of benes.
So if I get a low score on the LSAT, I will study at every opportunity. I have all the materials. While cooking, eating, bathing, before sleeping. I would love for you to have a purpose in your life so you do not get distracted. I have to remember, deservability. You deserve the very best in life.
Shopping! When I go to Wal-Mart I go with a gift card. My bills get paid first. I am on unemployment, so the account rarely gets touched. I am on my way to SSDI so I can get through law school. No one has money to help dig me out of things now. I have to be super careful about my money. I go there for needs when I do have money, but Costco is better. With Erin on a liquid diet for 6 weeks, we have 2 fridges full of food. So I am good. Plus, I got everything and more for Christmas. I Phone, GPS; the list goes on; not to mention the $5,000.00 the last boyfriend spent on clothes and shoes for me. I am good.
My health: I got a booby scare with recent mammography. They did a sonogram but found 2 swollen lymph nodes. I am getting a biopsy this Friday. Say a prayer at 1 pm your time. My family knows except for dad. he is so worried about me. I tell him everything, but this one I left to my brother Marc, who got cancer and Richie. MS: My cognitive abilities seem to be declining, but I can't say; I got a baseline Neuropsychology test and should probably do another. I was declined for long term care and my father is doing his best to get a policy so my brothers do not end up with me someday; mainly the costs and the care involved.
Valentine's day was pretty good, despite the missing boyfriend. My dad sent me a dozen multi-colored roses and I was thrilled. Next guy will have to live up to that and the unconditional love he has for me.
Mom is the same old story. Never called, sent nothing, has no idea what's happening with me. Does not really care. She is writing a book. I told her to keep me out of it. I have stopped hating her. I just accept that she is the best that it gets for me, and I have great friends, like Erin, who fill in the spaces.
I even tried talking with a social worker like her and she was just so awful. She told me law school was not in my future. I told her I carried 4.0's in legal studies my last 2 years of school, one of which I was already diagnosed! She got angry and hung up on me, told me I was annoying her. At first my feelings were hurt, but that woman was caustic and probably did not like her job. I would hate to see what she does with the terminally ill!
Stay busy, study, and look up. It makes you feel better.
Sunday, February 7, 2010
Of course denial is a river in Egypt, silly!
The worst part of this journey has been my family. Wait, scratch that; they have been the worst part of my life's journey; starting with my mother. Every time I talked to her all I heard was that "we do not have enough information. MS is a manageable disease, just like AIDS. Wow, that was encouraging. My brother Richie called and the first thing he asked was, "is it hereditary?" Always so self absorbed. My brother John acts as if no one exists. He said the same thing my mother said, only he did it more dismissively. And he wonders why he can't get a date! My brother Marc did his best, considering we were not there for him when he got cancer and he has a wife and two children.
My father has been the rock. He learned what he could and started looking for long term care plans in August. We found one but it was too expensive for me. We are still looking a year later, and I found a man at the Rocky Mountain MS Center who deals with these things. His wife died due to complications related to MS and he had no coverage and was working night and day to take care of her.
Dad calls every day, even if the super bowl is on. Even if he has a super busy day, he calls. He loves me unconditionally and all I can say is that I HOPE I can find a man in my life that treats me the same way. Minus the shut up and stop talking and the irritability. He can't help it though, he has type one diabetes.
One thing I can tell you in this blog is I have no resources or advice on family. All I know is that they can be brutal. Some may be understanding. But no matter how many therapists, neurophsychs, doctors and lawyers tell my mother I have a serious illness, she refuses to acknowledge it. She is a therapist herself and knows everything about everything. No matter how much material I give her on my disease and tell her they are from my doctors, the top doctors in the nation, she dismisses them with ignorant statements such as, "this is just a reason for you to be taken care of. This is just attention getting. This is ACOA stuff. She has no idea that doctors are diagnosing children at 18 months now. It is more than a possibility that any behavioral problems I had as a child were due to this disease.
I have to end here, but will add more tomorrow.
My father has been the rock. He learned what he could and started looking for long term care plans in August. We found one but it was too expensive for me. We are still looking a year later, and I found a man at the Rocky Mountain MS Center who deals with these things. His wife died due to complications related to MS and he had no coverage and was working night and day to take care of her.
Dad calls every day, even if the super bowl is on. Even if he has a super busy day, he calls. He loves me unconditionally and all I can say is that I HOPE I can find a man in my life that treats me the same way. Minus the shut up and stop talking and the irritability. He can't help it though, he has type one diabetes.
One thing I can tell you in this blog is I have no resources or advice on family. All I know is that they can be brutal. Some may be understanding. But no matter how many therapists, neurophsychs, doctors and lawyers tell my mother I have a serious illness, she refuses to acknowledge it. She is a therapist herself and knows everything about everything. No matter how much material I give her on my disease and tell her they are from my doctors, the top doctors in the nation, she dismisses them with ignorant statements such as, "this is just a reason for you to be taken care of. This is just attention getting. This is ACOA stuff. She has no idea that doctors are diagnosing children at 18 months now. It is more than a possibility that any behavioral problems I had as a child were due to this disease.
I have to end here, but will add more tomorrow.
Wednesday, January 27, 2010
Do not underestimate the power of the nurse practitioner!
Dear MS'er's and family members of the same:
As I stated in the blog "after the storm", I saw the nurse practitioner of my neurologist, who was not only super resourceful, she was compassionate and understanding and gave me all sorts of books and materials to supplement my prescriptions. I needed answers and I needed understanding and ways in which to make myself feel better. I also needed empowerment and hope that I could get through this.
She also made sure my application for financial help with the Copaxone was sent in and checked on the status. While it took 3 months and a lot of collecting of information, I got a full grant for the medication with payment of shipping only, which was $15.00 per shipment.
So I left feeling empowered and relieved. I also decided to make more appointments with her and any tests I got I would see my neurologist. So, word up MS'ers, the person to see for results and a first consultation is the neurologist, and for support and new symptoms or medication and resources, see the nurse practitioner!
I will end here, with more posts to come, reminding you that the nurse practitioner is underestimated. They are compassionate, resourceful and are able to give you the medications you need. They will also listen intently when you tell them you are not doing so well on a med and propose alternatives.
As I stated in the blog "after the storm", I saw the nurse practitioner of my neurologist, who was not only super resourceful, she was compassionate and understanding and gave me all sorts of books and materials to supplement my prescriptions. I needed answers and I needed understanding and ways in which to make myself feel better. I also needed empowerment and hope that I could get through this.
She also made sure my application for financial help with the Copaxone was sent in and checked on the status. While it took 3 months and a lot of collecting of information, I got a full grant for the medication with payment of shipping only, which was $15.00 per shipment.
So I left feeling empowered and relieved. I also decided to make more appointments with her and any tests I got I would see my neurologist. So, word up MS'ers, the person to see for results and a first consultation is the neurologist, and for support and new symptoms or medication and resources, see the nurse practitioner!
I will end here, with more posts to come, reminding you that the nurse practitioner is underestimated. They are compassionate, resourceful and are able to give you the medications you need. They will also listen intently when you tell them you are not doing so well on a med and propose alternatives.
Friday, January 22, 2010
I thought I was immortal
What was it with me that I thought I was immortal? I had to really look at my life's view; and it turned out I had Peter pan complex. I always took good care of myself, did my yearly check-ups and ate well. I did smoke - I quit 2 years before my diagnosis. That was my one weakness - ciggys. Then I just quit thinking I smoked for forty years so I should not smoke for the next forty years. I really thought I had it together. Turns out, even I could get a disease.
I always worried and obsessed about my health. I always had this looming feeling that I would end up with something painful, even though I was dealing with MS all my life. As I got older, my brain was unable to compensate and I began to have symptoms in a vacuum.
At 26, my right side went numb. The doctor thought it was stress because I was planning a wedding. I got a second opinion and the second doctor said I had MS, but if I allowed him to officially diagnose me, I would never get insurance and, more importantly, they had no cure nor did they know much about it. So I left the office with Prozac and the numbness left after a month, and I never experienced it like that until 2008.
The blindness in my right eye in 2003 was diagnosed as a migraine. While I do get severe migraines and have since high school, what I went into the emergency room for was not a migraine, it was optic neuritis.
I was never able to read maps, and as I got older, I was unable to listen attentively and became scattered and was unable to focus. I began to lose jobs as it looked as if I was not listening on purpose and I got into power struggles with my superiors; something I never had a problem with until I turned 30.
I just rationalized that it was time to get a degree. So at 35 I went to college at an online school to study management, which was the career I was in. I figured if I got a degree in it, I would get better pay and jobs. Unfortunately, I changed careers and degrees before I could get a better job in that field and I maxed out at 40k a year, but that story will come later.
I can say all of this easily, but it was a long hard road. I worked 12-18 hour shifts and went to school full time. my grades were average, and I wanted them to be better, but I lived in Seattle, the Capitol Hill District, and it was super expensive. I also had and brand new sports car I had to pay for. I was strapped to the car, the downtown apartment and my credit card payments.
I lived in Seattle for 5 years - from 2000 to 2005. The day I left there for Maui was one of the best days of my life. Seattle was dark, wet, cold and there were 3 suicides a year in my apartment complex. I would walk everywhere and see "cleanup vans" and yellow tape; and that smell. Anyway, I got out of there fast.
Before I left I found that I was having bad pain between my shoulder blades. It came and went. I also got numb feet and hands. I never thought anything about it. Just like I never thought twice about the blindness in my right eye; it was diagnosed as a migraine and went away after a few days.
All of the misdiagnoses, the inability to put together these symptoms together, coupled with the brushing off of all of them by myself and doctors made me feel like I was invincible and immortal. The chapter that opened in my life when I left Maui and moved to Denver in 2006 changed that forever.
I always worried and obsessed about my health. I always had this looming feeling that I would end up with something painful, even though I was dealing with MS all my life. As I got older, my brain was unable to compensate and I began to have symptoms in a vacuum.
At 26, my right side went numb. The doctor thought it was stress because I was planning a wedding. I got a second opinion and the second doctor said I had MS, but if I allowed him to officially diagnose me, I would never get insurance and, more importantly, they had no cure nor did they know much about it. So I left the office with Prozac and the numbness left after a month, and I never experienced it like that until 2008.
The blindness in my right eye in 2003 was diagnosed as a migraine. While I do get severe migraines and have since high school, what I went into the emergency room for was not a migraine, it was optic neuritis.
I was never able to read maps, and as I got older, I was unable to listen attentively and became scattered and was unable to focus. I began to lose jobs as it looked as if I was not listening on purpose and I got into power struggles with my superiors; something I never had a problem with until I turned 30.
I just rationalized that it was time to get a degree. So at 35 I went to college at an online school to study management, which was the career I was in. I figured if I got a degree in it, I would get better pay and jobs. Unfortunately, I changed careers and degrees before I could get a better job in that field and I maxed out at 40k a year, but that story will come later.
I can say all of this easily, but it was a long hard road. I worked 12-18 hour shifts and went to school full time. my grades were average, and I wanted them to be better, but I lived in Seattle, the Capitol Hill District, and it was super expensive. I also had and brand new sports car I had to pay for. I was strapped to the car, the downtown apartment and my credit card payments.
I lived in Seattle for 5 years - from 2000 to 2005. The day I left there for Maui was one of the best days of my life. Seattle was dark, wet, cold and there were 3 suicides a year in my apartment complex. I would walk everywhere and see "cleanup vans" and yellow tape; and that smell. Anyway, I got out of there fast.
Before I left I found that I was having bad pain between my shoulder blades. It came and went. I also got numb feet and hands. I never thought anything about it. Just like I never thought twice about the blindness in my right eye; it was diagnosed as a migraine and went away after a few days.
All of the misdiagnoses, the inability to put together these symptoms together, coupled with the brushing off of all of them by myself and doctors made me feel like I was invincible and immortal. The chapter that opened in my life when I left Maui and moved to Denver in 2006 changed that forever.
Wednesday, January 20, 2010
After the storm
I went back to work feeling awful after my diagnosis, and was in horrible pain. I love working, and I think most MS'er's do because it makes them feel independent and useful. At the time, I worked for 5 attorneys, all of whom loved me like a daughter.
It was early July, and I was originally sent to a neurologist who was as old as Christ (I swore I saw a younger version of him in the picture of the last supper). The man had no compassion for my pain. I was so angry. Angry for being stuck with this disease, angry for being 40 and getting it as my b-day gift, and angry because he refused to help me with my pain. I cried so hard, right there in the office and asked for my records. He was surprised. I was definitely leaving this ghost in the dirt; he was not doing a damn thing other than talking to fill the air. What really put me over the top was when he asked me, "What can I do for you?" when he walked in the office.
Now I had waited 4 months in pain to see this classmate of Christ's and he had the gall to ask, what can I do for you? So needless to say, we got off on the wrong foot because my mouth opened and a string of obscenities came flowing out so quickly as far as I know they are still hanging in the air over his office. Then, he did the "physical test" and said I was in great physical shape. What was he, a doctor from Bonanza? That was it. I got my records, crying hysterically, called the office and told Hugh I was not coming in. I was just too upset and in pain. "Not to be selfish,", he said, "but don't you think if you came in and worked it would help get your mind off things and give the powers that be a chance to work this out for you?" It made sense, so I went in.
I cried most of the day from the pain. They cried a little, too, when they saw what I was going through, but Hugh was right; the largest gift I ever got was from one of them when he came to my desk that day and told me he knew the top epilepsy doctor in the country and could get me a referral through him to the two top neurologists. I was elated. He gave me this man's number and I was in like Flynn. I got to see the best. If I had stayed home, I never may have had that chance.
Since I am a paralegal, I prepared a myriad of questions hoping to get them all in the one hour. They sat me in his office and he came in. He was young (but the first guy was classmates with Christ he was so old). I smiled and said, "you are so young!" Then laughed and told me I looked as if I were surprised. he told me to sit on the table and take off my shoes and socks. he then gave me a physical ambulatory test. He did this by having me first follow his pen with my eyes. He then took a safety pin and asked me if I felt it on various areas of my arms and legs, face hands and feet. All the while I was rattling off questions. Will the stiffness go away? The pins and needles? Can I get meds to ease the pain? can I start on Avonex or something??? All the while I was pushing each arm and leg against his arms, telling him when the buzzing stopped from his fork tuner on my hand, walking on foot in front of the other back and forth, closing my eyes while standing and touching each forefinger to my nose.
And so it went. I kept on with the questions as he pulled out my MRI. He said I had 12 spots on my brain. He then looked at the spine MRI's. I finally said, as he was mumbling, "Could you please tell me where these spots are by touching the area on my head and spine?" So he showed me, one by one, and I asked what each area controlled. When he showed me on my spine I told him those were the areas that most bothered me. We then sat down. He asked about bowel movements and urination. I told him I can't sleep at night because I get up a lot to pee. I then asked him if I could get meds. He gave me something for bladder urgency - and that was it! I was so mad! he did say we would get me on Copaxone ASAP as I was irritable and took lexapro.
All injectables cost 2k per month so he told me it was highly unlikely my insurance would cover it. He had me fill out a form for NORD (National Organization for Rare Disorders), who helps via finances with these things, and I went on my way. Without any pain medication.
Two days later I called back. I asked for another appointment right away as I was in grave pain and was going to kill myself. I could not take it anymore. I was crying hysterically. They set me up that day and I saw the nurse practitioner. What a God-send she was. She set me up with gabapetin for nerve pain, celexa, laxatives to help train my bowel, since I went 7 times per day (she even included the gloves!), and reading material for my family and myself. She also directed me to the office of Colorado Indigent Care Plan and I went there first and filled out all their paperwork so I could get drugs for $5. Then I raced to the pharmacy and when the girl came to the counter and asked if she could help me, I broke down and cried. I cried so hard from the pain and through hysteria told her I was so sorry, I was just in so much pain.
This was the beginning of my journey with feeling better.
It was early July, and I was originally sent to a neurologist who was as old as Christ (I swore I saw a younger version of him in the picture of the last supper). The man had no compassion for my pain. I was so angry. Angry for being stuck with this disease, angry for being 40 and getting it as my b-day gift, and angry because he refused to help me with my pain. I cried so hard, right there in the office and asked for my records. He was surprised. I was definitely leaving this ghost in the dirt; he was not doing a damn thing other than talking to fill the air. What really put me over the top was when he asked me, "What can I do for you?" when he walked in the office.
Now I had waited 4 months in pain to see this classmate of Christ's and he had the gall to ask, what can I do for you? So needless to say, we got off on the wrong foot because my mouth opened and a string of obscenities came flowing out so quickly as far as I know they are still hanging in the air over his office. Then, he did the "physical test" and said I was in great physical shape. What was he, a doctor from Bonanza? That was it. I got my records, crying hysterically, called the office and told Hugh I was not coming in. I was just too upset and in pain. "Not to be selfish,", he said, "but don't you think if you came in and worked it would help get your mind off things and give the powers that be a chance to work this out for you?" It made sense, so I went in.
I cried most of the day from the pain. They cried a little, too, when they saw what I was going through, but Hugh was right; the largest gift I ever got was from one of them when he came to my desk that day and told me he knew the top epilepsy doctor in the country and could get me a referral through him to the two top neurologists. I was elated. He gave me this man's number and I was in like Flynn. I got to see the best. If I had stayed home, I never may have had that chance.
Since I am a paralegal, I prepared a myriad of questions hoping to get them all in the one hour. They sat me in his office and he came in. He was young (but the first guy was classmates with Christ he was so old). I smiled and said, "you are so young!" Then laughed and told me I looked as if I were surprised. he told me to sit on the table and take off my shoes and socks. he then gave me a physical ambulatory test. He did this by having me first follow his pen with my eyes. He then took a safety pin and asked me if I felt it on various areas of my arms and legs, face hands and feet. All the while I was rattling off questions. Will the stiffness go away? The pins and needles? Can I get meds to ease the pain? can I start on Avonex or something??? All the while I was pushing each arm and leg against his arms, telling him when the buzzing stopped from his fork tuner on my hand, walking on foot in front of the other back and forth, closing my eyes while standing and touching each forefinger to my nose.
And so it went. I kept on with the questions as he pulled out my MRI. He said I had 12 spots on my brain. He then looked at the spine MRI's. I finally said, as he was mumbling, "Could you please tell me where these spots are by touching the area on my head and spine?" So he showed me, one by one, and I asked what each area controlled. When he showed me on my spine I told him those were the areas that most bothered me. We then sat down. He asked about bowel movements and urination. I told him I can't sleep at night because I get up a lot to pee. I then asked him if I could get meds. He gave me something for bladder urgency - and that was it! I was so mad! he did say we would get me on Copaxone ASAP as I was irritable and took lexapro.
All injectables cost 2k per month so he told me it was highly unlikely my insurance would cover it. He had me fill out a form for NORD (National Organization for Rare Disorders), who helps via finances with these things, and I went on my way. Without any pain medication.
Two days later I called back. I asked for another appointment right away as I was in grave pain and was going to kill myself. I could not take it anymore. I was crying hysterically. They set me up that day and I saw the nurse practitioner. What a God-send she was. She set me up with gabapetin for nerve pain, celexa, laxatives to help train my bowel, since I went 7 times per day (she even included the gloves!), and reading material for my family and myself. She also directed me to the office of Colorado Indigent Care Plan and I went there first and filled out all their paperwork so I could get drugs for $5. Then I raced to the pharmacy and when the girl came to the counter and asked if she could help me, I broke down and cried. I cried so hard from the pain and through hysteria told her I was so sorry, I was just in so much pain.
This was the beginning of my journey with feeling better.
Tuesday, January 19, 2010
Good days; bad days
Dear Ms'er's:
This is my first post, although I set this up when I was initially formally diagnosed in 2008. I had one attack before that in New York at the age of 26. The doctor told me I had it but that 1) there was no treatment at the time and 2) I would create a mess of my life with insurance and pre-existing conditions. So I left with a bottle of Prozac and the numbness on my right side eventually disappeared.
I buried that secret deep inside me and did no research whatsoever; so I never knew definitively if I was going to see more of the same. I often got numb feet, tripped easily and went blind in my right eye. I also had horrible burning headaches that would not go away no matter what I did and fatigue that I used tons of caffeine and sugar to stave off. I got vertigo often. Tingling from my neck to feet. Weakness in my right leg. But I knew that if I went to the doctor and asked for a diagnosis, it would change my life forever. Boy, I sure underestimated that!
Then in March of 2008 I got numb on my right side all over again. I had just gotten insurance, so I set up an appointment. However, I forgot about it as it went away and ended up with a physical and a clean bill of health. Then it came back in April. I decided not to go to the doctor as the numbness went away so fast the previous month perhaps it was a virus?
May passed with no numbness. In June I usually visit my friend Johnnie as we have close birthdays and I go to LA. Two days before I was to leave I woke up completely numb on both sides and stiff on my right side. I got in with the doctor right away, and my GP was on vacation, so there was a new fill in GP. He began asking me questions about all the symptoms I had in the past - the burning headaches, blindness, numbness and frequency, and I denied everything. I told him it happened to me once before in my 20's and the doctor gave me Prozac and it went away. This doctor looked me straight in the eye and said "I bet if I do an MRI it will come up consistent with Multiple Sclerosis". And I replied, "Oh no way, that does not run in our family". Then he looked at me, I looked at him, and his eyes just pierced my soul and the realization hit me that the gig is up, I can no longer hide from this disease. I cried while I waited for his orders to get MRI's.
The next day, the day I was to leave to LA for my birthday, I was getting an MRI. I was feeling so uncomfortable - my arm was stiff, my body was numb and I wanted it to go away for my trip. I got the MRI's and three hours later left for LA.
The pain became excruciating. I could barely walk. My body was numb. I could not sleep because of pins and needles all night. My right arm was stiff and the other side came and went. To top it off, it was 113 degrees every day. Johnnie hung in there with a positive outlook. I just wanted some drugs to knock me out until it was over. Johnnie's apartment was small and hot. Eventually I had to ask my brother if I could stay with him at his house ( he lives in LA). I left on a Friday and by Sunday the symptoms had eased. Nothing prepared me for the phone call I got from the doctor on Monday morning, which was also my birthday.
I am a Gemini. I believe everything is changeable and negotiable; even death. My favorite saying was, "this, too, shall pass." This was my freedom from all bad situations, my negotiating point. Until that day, at 9 am. Doctor Park, the one who ordered the MRI's, told me my scans were consistent with MS. He then got me an appointment with a neurologist. At that time, no one was home. I was alone. I remember thinking of all the people who were waiting to hear of my results.
I looked down at the phone and thought to myself, this will not pass. There is no cure. It is not negotiable, nor is it changeable. My entire foundation of my personality, the light in my eyes and the beliefs I used as inspiration for others was gone. I took a moment to breathe that in, and the shock was overwhelming.
I then called my best friend, Erin, who cried like a baby on the phone. I called my dad who cried. "The family will come together for you on this." I told him, "I will never be a lawyer now!" and he replied, "Yes you will, you will be the new Perry Mason!" My mother wanted Doctor Parks' phone number immediately. Was it a diagnosis or consistent with and we need an expert opinion? There is no need to freak out, we need more information. Head stuff (she is a social worker). "Isn't it great you have such a great friend like Erin to help you?" Erin is my best friend and roommate.
I then saw an expert who pointed all the spots out on my brain and spine and officially diagnosed me. We then had a fight because he needed a battery of blood tests to give me any pain meds, and I switched doctors.
The real MS journey began there. It has been so much more difficult than I thought. My fear sometimes becomes the worst part. I read stories about others and I get scared. Will that be me soon? Will I poop the bed? Will I pee my pants? Will I lose my independence? Will my family take care of me, or will I end up in a place where no one cares and I am forgotten? Worse, will I forget everything in my life and become someone with no identity? When I meet a new man, do I tell him he might have to wheel me around in 20 years? Will they all run?
Like everyone with MS, I have gotten medication and I have good days and bad days. On the good days, I don't want to go to bed; I want the day to last forever. On the bad days, it's life as usual with lots of pain.
That's it for tonight. I promised my roommate I would get up early and begin the LSAT study crunch. I will end with this, which my father tells me all the time - look up, it keeps your spirits up.
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