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.
Subscribe to:
Posts (Atom)
Posts
