Last night I attended an MS information session for those recently diagnosed with MS. The topic for the evening was financial planning and insurance. During the session I learned that many people with MS and other degnerative illnesses are forced to quit their job and then lose their health insurance as a result. If they do not immediately qualify for Medicare or Medicaid they are often forced to apply for Social Security Disability Insurance (SSDI). According to the presentation, "To be entitled to Social Security benefits, a person must have worked 5 of the 10 years immediately before the disability and paid FICA taxes. The disability or impairment must be expected to last for at least 12 months." In addition, "A person becomes Medicare eligible 24 months from the date of the initial application for SSDI-once the SSDI award has been made."
Here is my question Mr. Legislator: How can the government allow a sick or disabled person to wait up to 24 months for helP? This seems unconscionable to me.
I am writing to ask that you provide more funding now for indigent care. I am also asking that you help change the laws that can make a person wait 24 months for the funding and care they need.
Addionally, I would also like to see more funding dedicated to helping poor,uninsured people with MS get their medications. I would specifically like to see funding to pay for interferons that slow the spread of the disease. I would like to see more funding for cortico steriods for those suffering a relapse or flare up of their MS. Sir, thank you for considering my plea on behalf of those receiving indigent care and the MS sufferers who need insurance immediately.
Respectfully,
Nadja Tizer
*Blog Readers please send letter like this one to your legislator today.
Wednesday, May 28, 2008
Thursday, May 22, 2008
I get me, why don't you?
I get me,so why doesn't anyone else? I used to think that at one time or another we all have experienced just about everything under the sun, that there is no unique experience. Now I have changed my view. While we all do have many shared emotions and experiences, no one who has not experienced MS can know what it is like to have MS.
Lately I feel like no one gets me except other people with MS. I know that people mean well but I am getting tired of people telling me all the things I "need" to do. I am also tired of the looks I get when I say certain things. For example, if I say, "I don't care what others think," whoever I tell that to acts like I'm a bitch for saying that. The thing is that I don't mean that statement in a bitchy way. I just mean, "It's all right now, I learned my lesson well, you can't please everyone, you've got to please yourself." It's not me being depressed,it's not me blowing other people off, it's just me recognizing that I need to draw boundaries and change my life.
My husband expressed distress about the fact that I kept saying that I was "myself plus 10% now" because he said it makes it sound like I am asymptomatic so I have been making an effortto let people know that even though I seem ok, I'm often not. I have been telling folks that I am afraid to fall asleep. I explain the symptoms I feel when I am tired but I can sense that when I am through, people wish I had not addressed this issue so matter-of-factly. I think they do not appreciate my honesty. I actually have gotten the sense that rather than addressing this with me,my friends are discussing me behind my back. You might say, "Well, you just said you don't care whatpeople think so why do you care?" I say, "I don't but real friends should say this to my face."
I am also sick of the whole, "Are you seeing a therapist?" bit. I am guilty of doing this to friends and even my husband but I am sick of everyone telling me that I can't deal with this big change unless I get therapy. Well trust me, if I think I need therapy, I'll go. Sorry for the rant...
Lately I feel like no one gets me except other people with MS. I know that people mean well but I am getting tired of people telling me all the things I "need" to do. I am also tired of the looks I get when I say certain things. For example, if I say, "I don't care what others think," whoever I tell that to acts like I'm a bitch for saying that. The thing is that I don't mean that statement in a bitchy way. I just mean, "It's all right now, I learned my lesson well, you can't please everyone, you've got to please yourself." It's not me being depressed,it's not me blowing other people off, it's just me recognizing that I need to draw boundaries and change my life.
My husband expressed distress about the fact that I kept saying that I was "myself plus 10% now" because he said it makes it sound like I am asymptomatic so I have been making an effortto let people know that even though I seem ok, I'm often not. I have been telling folks that I am afraid to fall asleep. I explain the symptoms I feel when I am tired but I can sense that when I am through, people wish I had not addressed this issue so matter-of-factly. I think they do not appreciate my honesty. I actually have gotten the sense that rather than addressing this with me,my friends are discussing me behind my back. You might say, "Well, you just said you don't care whatpeople think so why do you care?" I say, "I don't but real friends should say this to my face."
I am also sick of the whole, "Are you seeing a therapist?" bit. I am guilty of doing this to friends and even my husband but I am sick of everyone telling me that I can't deal with this big change unless I get therapy. Well trust me, if I think I need therapy, I'll go. Sorry for the rant...
Wednesday, May 21, 2008
Special guest Suzanne Caroll sounds off on essential questions
Below please read this important email from Suzanne Caroll regarding my "essential questions." Thanks Susan :)
Hi Nadja - I am going to weigh in on your questions to the best of my ability.
1) What causes MS?
There is nothing definitive at this point, but there is speculation based on much study and data that is now available.
It would appear that there is a gene that is present in all that have MS.
This gene is turned on by yet to be determined factors, as they know that some who possess this gene never develop the disease.
Some of the factors under scrutiny are:
- measles or rubella as a young child
- mononucleosis
- other childhood viruses
- environmental factors
2) Can MS be cured?
No - not at this time... no matter what you may read as much as I hate to say this.
I believe the cure is no more than a decade off. It may come in the form of a vaccine.
3) Interferon's and other therapies absolutely do help. There is much data available to support this, and everything I am writing to you today.
Interferon's seem to be the most effective at slowing the progression of the disease.
Of the three interferon's available, the drug Rebif has the highest level of interferon available.
Even when the disease seems silent it is not silent inside the brain, that is why treatment is paramount for all of us!
4) Having a healthy lifestyle can benefit you very much no matter what your health condition,
however there is no data to suggest any of the things you mention have a direct correlation to the progression
of MS. All these things however will make you more comfortable, and that can never be a bad thing.
(when my leg muscles get very tight for several days and make it hard to walk naturally stretching is super
helpful for example, but stretching everyday does not make those episodes go away)
5) Every single person with MS is different - you must find what works best for you.
That took some time for me to find a proper balance that works for me - take it slow
as you rediscover your body in this new way. You'll find your comfortable path naturally.
Don't force yourself... ease into this gently... it's the kindest thing you can do for yourself.
• Last - I am currently on the drug Tysabri - it is a monoclonal antibody, not an interferon. I have been on
all of the interferon's over the past 15 years and they have done a great job for me. Through the years
I have had to change meds as my situation warranted it. It is so nice to have so many options. It makes
managing this a lot more successful over a long period of years.
I have 3 kids about your age, and 3 grandkids. (I had my first at age 20 - I am 52 now) I have owned my own advertising/PR business for 19 years, and
have owned, produced and hosted a very popular jazz show for 13 years. I do a live 4 hour show every Sunday.
I have traveled all over this country and Europe. I have a loving wonderful marriage.
I have done everything I dreamed of for my life and so much more... and I'm not done yet!!!!!!!
The MS didn't stop me, it made me realize I better get off my ass and grab life while the grabbing is good... and it's still good
all these years after my "d-day" (diagnosis day)!!!
I know how focused you are on this right now, but you won't always be. Most days I give it little of my thought unless
I am forced to by virtue of an annoying flair... or being delighted with involvement in an MS event to raise money,
or I am reaching out to someone sweet like you who is so new on her long journey. I for the most part live a very normal life.
Most people that I meet don't have any clue of my MS unless I make it known. I prefer to be known as the great jazz broadcaster
who happens to have MS, not the girl who has MS that is on the radio. I hope that makes sense.
I know you are looking for so many answers right now Nadja. Some you will find through your research, but many of them are yours to develop.
Your life is still very much in your hands even though it may not feel that way to you right now.
You can listen to my show on the internet while I am on the air every Sunday morning 8- noon EST by logging onto
1015theriver.com and then click on listen live. I'd love it if you would tune in sometime - it's a great way to kick back, groove out and enjoy.
Jazz hugs!
Suzanne
Hi Nadja - I am going to weigh in on your questions to the best of my ability.
1) What causes MS?
There is nothing definitive at this point, but there is speculation based on much study and data that is now available.
It would appear that there is a gene that is present in all that have MS.
This gene is turned on by yet to be determined factors, as they know that some who possess this gene never develop the disease.
Some of the factors under scrutiny are:
- measles or rubella as a young child
- mononucleosis
- other childhood viruses
- environmental factors
2) Can MS be cured?
No - not at this time... no matter what you may read as much as I hate to say this.
I believe the cure is no more than a decade off. It may come in the form of a vaccine.
3) Interferon's and other therapies absolutely do help. There is much data available to support this, and everything I am writing to you today.
Interferon's seem to be the most effective at slowing the progression of the disease.
Of the three interferon's available, the drug Rebif has the highest level of interferon available.
Even when the disease seems silent it is not silent inside the brain, that is why treatment is paramount for all of us!
4) Having a healthy lifestyle can benefit you very much no matter what your health condition,
however there is no data to suggest any of the things you mention have a direct correlation to the progression
of MS. All these things however will make you more comfortable, and that can never be a bad thing.
(when my leg muscles get very tight for several days and make it hard to walk naturally stretching is super
helpful for example, but stretching everyday does not make those episodes go away)
5) Every single person with MS is different - you must find what works best for you.
That took some time for me to find a proper balance that works for me - take it slow
as you rediscover your body in this new way. You'll find your comfortable path naturally.
Don't force yourself... ease into this gently... it's the kindest thing you can do for yourself.
• Last - I am currently on the drug Tysabri - it is a monoclonal antibody, not an interferon. I have been on
all of the interferon's over the past 15 years and they have done a great job for me. Through the years
I have had to change meds as my situation warranted it. It is so nice to have so many options. It makes
managing this a lot more successful over a long period of years.
I have 3 kids about your age, and 3 grandkids. (I had my first at age 20 - I am 52 now) I have owned my own advertising/PR business for 19 years, and
have owned, produced and hosted a very popular jazz show for 13 years. I do a live 4 hour show every Sunday.
I have traveled all over this country and Europe. I have a loving wonderful marriage.
I have done everything I dreamed of for my life and so much more... and I'm not done yet!!!!!!!
The MS didn't stop me, it made me realize I better get off my ass and grab life while the grabbing is good... and it's still good
all these years after my "d-day" (diagnosis day)!!!
I know how focused you are on this right now, but you won't always be. Most days I give it little of my thought unless
I am forced to by virtue of an annoying flair... or being delighted with involvement in an MS event to raise money,
or I am reaching out to someone sweet like you who is so new on her long journey. I for the most part live a very normal life.
Most people that I meet don't have any clue of my MS unless I make it known. I prefer to be known as the great jazz broadcaster
who happens to have MS, not the girl who has MS that is on the radio. I hope that makes sense.
I know you are looking for so many answers right now Nadja. Some you will find through your research, but many of them are yours to develop.
Your life is still very much in your hands even though it may not feel that way to you right now.
You can listen to my show on the internet while I am on the air every Sunday morning 8- noon EST by logging onto
1015theriver.com and then click on listen live. I'd love it if you would tune in sometime - it's a great way to kick back, groove out and enjoy.
Jazz hugs!
Suzanne
The hidden symptoms of MS
I imagine that many people with MS are like me. At first we are astonished by our diagnosis. It is the center of our thoughts. Our symptoms are a giant net and we flail at their cortex. Then, depending on our predispositions we start to move beyond our diagnosis. I imagine that some people define themselves by their MS but that most of us choose not to. I have chosen not to. Yeah, I have MS but that is a tiny part of what fundamentally makes me, me.
I also imagine that at first many of those with MS tell others a lot about their symptoms but in time, they stop talking about everything except the major stuff. I guess that at that point, if they seem cheery, well-adjusted and physically well that most of those around them assume they are no longer experiencing symptoms. I doubt this is really the case though.
I am in "Remission" and in some ways I would say I am 110% of what I used to be but in another sense I am still really sick. I am exhausted all the time now. I still have trouble focusing my eyes. I get spasms in my back and neck. Nights are the worst... I am depressed, tired and afraid to go to sleep. Every REM sleep has its terrors. "Brain Cheese" mentioned "Going down the rabbit hole" in her blog. Every night I go down that hole, sucked into the black vortex of REM sleep. I startle awake, feeling I have forgotten to swallow. I wonder if I will wake up or die somehow during the night. I have already made my peace with death so I usually go to sleep without fear now.
When I awake I have to come back anyway. I awake nauseated every time. It is only through breathe that I slowly resuscitate myself each morning. I awake blurry-eyed and sick. I mediate and use my breathe to clear the symptoms enough that I can get out of bed. Once I have completely cleared my body in the bathroom, I begin to see a little better. Once I have eaten and swallowed some black tea I approach the reality where "normal" people live but even then I am other.
Even with "benign" MS you know that it is not really benign because you can have a relapse at any time and then it is no longer benign. You live, trying not to wait for the other shoe to drop. You try to be present, define priorities and set boundaries but people are looking at you like you are fine and that you are also a big bitch for not caring anymore what anyone else thinks. I am sorry but half the time I am so depressed I don't even care what I think. I give myself a pep talk and say that it's ok to be sad sometiomes but I hate myself for even dwelling.
I also imagine that at first many of those with MS tell others a lot about their symptoms but in time, they stop talking about everything except the major stuff. I guess that at that point, if they seem cheery, well-adjusted and physically well that most of those around them assume they are no longer experiencing symptoms. I doubt this is really the case though.
I am in "Remission" and in some ways I would say I am 110% of what I used to be but in another sense I am still really sick. I am exhausted all the time now. I still have trouble focusing my eyes. I get spasms in my back and neck. Nights are the worst... I am depressed, tired and afraid to go to sleep. Every REM sleep has its terrors. "Brain Cheese" mentioned "Going down the rabbit hole" in her blog. Every night I go down that hole, sucked into the black vortex of REM sleep. I startle awake, feeling I have forgotten to swallow. I wonder if I will wake up or die somehow during the night. I have already made my peace with death so I usually go to sleep without fear now.
When I awake I have to come back anyway. I awake nauseated every time. It is only through breathe that I slowly resuscitate myself each morning. I awake blurry-eyed and sick. I mediate and use my breathe to clear the symptoms enough that I can get out of bed. Once I have completely cleared my body in the bathroom, I begin to see a little better. Once I have eaten and swallowed some black tea I approach the reality where "normal" people live but even then I am other.
Even with "benign" MS you know that it is not really benign because you can have a relapse at any time and then it is no longer benign. You live, trying not to wait for the other shoe to drop. You try to be present, define priorities and set boundaries but people are looking at you like you are fine and that you are also a big bitch for not caring anymore what anyone else thinks. I am sorry but half the time I am so depressed I don't even care what I think. I give myself a pep talk and say that it's ok to be sad sometiomes but I hate myself for even dwelling.
Monday, May 19, 2008
More MS blogs
I can tell that I am just starting to skim the surface of MS bloggers and boy can they write. Check out the followining blogs (these are just the tip of the iceberg, kudos fellow writers)
http://carnivalofmsbloggers.blogspot.com/
http://brassandivory.blogspot.com/
http://msresourcelinks.blogspot.com/
http://brain-cheese.blogspot.com/
http://shortinthecord.blogspot.com/
http://mdmhvonpa.blogspot.com/
http://carnivalofmsbloggers.blogspot.com/
http://brassandivory.blogspot.com/
http://msresourcelinks.blogspot.com/
http://brain-cheese.blogspot.com/
http://shortinthecord.blogspot.com/
http://mdmhvonpa.blogspot.com/
Journal 5/19/08
Ok, so I did not abandon my loyal readership just because I got a favorable prognosis but I did decide that now I can really get down to the business of world and systems change so I took a few dyas off from serious writing to be spontaneous and kick up my heels a little. I got "Denver Refahionista" started. It is a "green" clothing business where I take old clothing and 'refashion" it into something new and hip. Sometimes I just buy used items and pair them to make hot new outfits and sometimes I "refashion" old clothes to make them into something botiquey and fun. I have decided to donate 50% of any profit I make to "Environment Colorado". I hope this project raises awareness about sustainable living and our immediate need to "Save the World."
I also got to spend some time with friends this weekend. On Saturday we went to dinner and sat on the awesome patio at Pearl Street Grill. We then went out to Vinyl and caught up with some other friends.
On Sunday I went to a great yoga class and then stayed after to sign up for yoga teacher training. I also worked in the yard with Matt but he did most of the work. I slept like two hours in the middle of the afternoon and then got up, made dinner, watched T.V. and played Wii with Matt. Then I slept 9 more hours but I'll probably take another nap soon.
Today I am going to buy a car, get some groceries, buy some stuff for the new business and go to my second MS meeting. I may do some other stuff too but I'm kind of just kicking back and enjoying the sunshine so we'll see. I do plan to finish a dress I am refashiioning but I'm in no rush.
Tomorrow I will probably work on the memoir.
I also got to spend some time with friends this weekend. On Saturday we went to dinner and sat on the awesome patio at Pearl Street Grill. We then went out to Vinyl and caught up with some other friends.
On Sunday I went to a great yoga class and then stayed after to sign up for yoga teacher training. I also worked in the yard with Matt but he did most of the work. I slept like two hours in the middle of the afternoon and then got up, made dinner, watched T.V. and played Wii with Matt. Then I slept 9 more hours but I'll probably take another nap soon.
Today I am going to buy a car, get some groceries, buy some stuff for the new business and go to my second MS meeting. I may do some other stuff too but I'm kind of just kicking back and enjoying the sunshine so we'll see. I do plan to finish a dress I am refashiioning but I'm in no rush.
Tomorrow I will probably work on the memoir.
Friday, May 16, 2008
Neurologist Visit 5/15/08
I have some very positive news to share with you all today. The neurologist termed my MS "monophasic" (one time bout) and "benign" for now since I have to have another relapse in order to change the diagnoses. He does not want to put me on medication yet and my follow up isn't for 6 months. I am so blessed and relieved. I will just try to exercise and eat right for now and hope that maybe my MS is a one time deal. I only have two lesions on my brain and none on my spine so I'm optimistic. All my blood work came back healthy too. He said I may also just have a very mild form of the disease that will just ask me to slow down but will not inhibit my dreams. I am going to just be very present in everything I do and pray that no further relapses occur.
Namaste,
Nadja
Namaste,
Nadja
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