January started with a lot of fear and depression. Then we discussed some common MS myths and RA myths on HealthCentral. Ampyra gets approved, I get to talk to some MSers who have used it, and we learn the price will be $12,850.
February started with LOTS of SNOW!! Discussion of diagnostic criteria and changes for clinically isolated syndrome. Types of clinical trials, phases and protocols, and patient participation. And how having two diagnoses is sometimes better than one.
March was MS Awareness and Education Month, I told my diagnosis story, and we talked about talking to our doctors on HealthCentral. The "little guys" celebrated their 2nd birthdays. Sometimes the nonsense updates are the best ones.
In April, I was privileged to meet with some MS bloggers here in the mid-Atlantic. Talked about vitamin D and obesity, folic acid and methotrexate, and biologic medications for RA. I also contemplated how my perception of insurance and pharma has changed as I've had different experiences. Then my computer went CRASH!!
May began with travel to Switzerland where I met with a few of other MSers active online. I learned that I could man-handle a bit of spasticity although I did have an embarrassing incident in the bathroom of an art museum. Rob bravely mows the jungle called the backyard and then a large portion of a tree falls after a storm.
June began with Rituxan, travel and an 11% weight loss. NMSS awards 7 grants related to study of CCSVI. I venture to Washington state where I get to meet some awesome MS bloggers before embarking on a cruise to Alaska. Fortunately, I didn't really gain much at all on the cruise. At HealthCentral, we discussed how gender affects MS.
July was special in that I got to interview my mom regarding her perspective on MS. Rob also shares his thoughts. I contemplate when learning about others teaches you about yourself. Unfortunately, I also develop phlebitis in two different veins after the Rituxan infusions the previous month. However, I was happy to begin sharing photos from the Alaskan cruise.
August was marked by the annual increase in insurance premiums. I am featured in a Momentum magazine article and begin monthly steroid treatments for the rest of the year. I still have no brain lesions, whoohoo!, at HealthCentral we focus the month on pediatric MS, and most importantly, I am still me.
September was the month I finally painted my music studio and Oscar escaped for a week. I reach a 16% weight loss for the year so far and talk about shopping for clothes. A frank discussion of RA, depression, and suicide takes place at MyRACentral. We discuss programs for patients and promotional material published by phama companies. And occasionally we all just need to take a brain dump.
In October, we learn the price for the new drug Gilenya; then we learn about financial support Novartis is offering. I share photos with you of me speaking at the 2010 ePatient Connections Conference in Philadelphia and tell you about the patient panel at BlogWorldExpo. (I realize now that I never did write a post about Las Vegas...ooops.) But Mitch of Enjoying the Ride talks to us. The doctor discovers spurs under my knee cap, I 'celebrate' my 5-year MS diagnosis anniversary, and I discuss how RA has affected me over the years.
In November, Marc "the wheelchair kamikaze" talks with us at HealthCentral regarding CCSVI. Nature leaves its beautiful mark on my front sidewalk and a curious student asks questions. Biogen announces that PML deaths number 15. I share a vlog instead of a regular post and try to prepare for the holidays.
December starts with Musette fishing for kitty cats, diverticulosis, and the need to eat more fruits and veggies. The total number of Tysabri patients who have developed PML reaches 79. I ponder what "normal tired" feels like and talk about feeling blech. Staying up through the night, I photograph the lunar eclipse which occurs with the Winter Solstice this year. Then I share a Christmas rose and talk about spending time with my nephews.
Looking back at all the traveling I had done this year and the level of activity I've maintained, it is apparent that I am doing better than during the previous two years. I suspect it is the Rituxan which has changed directions for me. Loosing weight hasn't hurt, that's for sure.
I'm really looking forward to the coming year and hope that 2011 is even better!!
Happy New Year to you and yours!
Friday, December 31, 2010
Tuesday, December 28, 2010
Provigil and Nephews
Hi Guys,
This going to be a very brief post/email of sorts. I've been visiting my brother and his family back home. We are having a WONDERFUL time!! And I have taken advantage of something in my "tool belt" to assist with being fully-functioning.
Let me backup just a bit. I had a neuro appointment on Dec 16. During that visit I did mention that my fatigue levels were creeping back up. Now, it's not the "I'm so completely non-functioning that I can't even get up from being horizontal on the couch or be able to carry on a conversation" fatigue. I haven't felt THAT fatigue for about a year (since I started Rituxan).
There's also been improvement in the "I walk for a few blocks and really can't feel my legs/hips, and if I push forward, my legs will magically become 50 lb concrete blocks (each) ...and if I ignore THAT and keep going, I'll be running into walls, people, things and tripping over my own feet" since changing medications. (It might not be the medication; it could be normal improvement of a symptom which has plagued me for years now; seems too coincidental; doesn't really matter."
So my neuro nurse suggested that I try the Provigil again. I still have a small supply (which is probably expired) and recall the H... it was to obtain that at the time. I didn't ask for a new prescription.
On the day of flight travel out here, I took half of one. I felt normal. Next day another half. I did ok. Well, I yesterday I was dragging before I ever really woke up so I took a whole one. Within an hour (I'm guessing cause I wasn't looking at the clock), I was able to feel alert and could interact with the boys. Thank goodness.
Today, I'm going to take a full one again. Not worried so much about being up too late tonight cause I'm the one who has been ready to hit the sack before any of the male occupants of the house. I wonder how these kids can have so much energy...it's exciting and exhausting. But I'm having great fun!!
So thank you, pharma, for helping me to enjoy the holidays with my family. I also want to thank the morning fairy for waking me up at 8am sharp (or earlier) each morning too. I haven't been such a slug on this visit. :-)
Lisa
This going to be a very brief post/email of sorts. I've been visiting my brother and his family back home. We are having a WONDERFUL time!! And I have taken advantage of something in my "tool belt" to assist with being fully-functioning.
Let me backup just a bit. I had a neuro appointment on Dec 16. During that visit I did mention that my fatigue levels were creeping back up. Now, it's not the "I'm so completely non-functioning that I can't even get up from being horizontal on the couch or be able to carry on a conversation" fatigue. I haven't felt THAT fatigue for about a year (since I started Rituxan).
There's also been improvement in the "I walk for a few blocks and really can't feel my legs/hips, and if I push forward, my legs will magically become 50 lb concrete blocks (each) ...and if I ignore THAT and keep going, I'll be running into walls, people, things and tripping over my own feet" since changing medications. (It might not be the medication; it could be normal improvement of a symptom which has plagued me for years now; seems too coincidental; doesn't really matter."
So my neuro nurse suggested that I try the Provigil again. I still have a small supply (which is probably expired) and recall the H... it was to obtain that at the time. I didn't ask for a new prescription.
On the day of flight travel out here, I took half of one. I felt normal. Next day another half. I did ok. Well, I yesterday I was dragging before I ever really woke up so I took a whole one. Within an hour (I'm guessing cause I wasn't looking at the clock), I was able to feel alert and could interact with the boys. Thank goodness.
Today, I'm going to take a full one again. Not worried so much about being up too late tonight cause I'm the one who has been ready to hit the sack before any of the male occupants of the house. I wonder how these kids can have so much energy...it's exciting and exhausting. But I'm having great fun!!
So thank you, pharma, for helping me to enjoy the holidays with my family. I also want to thank the morning fairy for waking me up at 8am sharp (or earlier) each morning too. I haven't been such a slug on this visit. :-)
Lisa
Saturday, December 25, 2010
Thursday, December 23, 2010
Carnival of MS Bloggers #78
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Three Years of the Carnival!!
from Judy at Peace Be With You
Sometimes one gets lost
in the hustle and bustle
and forgets to breathe.
Finding one’s stillness
becomes elusive when pressed
to match the world’s whir.
A moment of peace
restores and rejuvenates
so one can go on.
in the hustle and bustle
and forgets to breathe.
Finding one’s stillness
becomes elusive when pressed
to match the world’s whir.
A moment of peace
restores and rejuvenates
so one can go on.
by Trish of These Pretzels Are Making Me Thirsty
http://xkcd.com/
by Mis of Just My Thoughts...
On the first day of Christmas MS gave to me, a painful shot in the ass.
On the second day of Christmas MS gave to me, two vision impaired eyeballs
and a painful shot in the ass.
On the third day of Christmas MS gave to me, three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass.
On the fourth day of Christmas MS gave to me, four spastic limbs
three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass.
On the fifth day of Christmas MS gave to me, five... glowing...lesions!!
four spastic limbs
three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass.
On the sixth day of Christmas MS gave to me, six handicapped parking permits
five... glowing...lesions!!
four spastic limbs
three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass.
On the seventh day of Christmas MS gave to me, seven tricked out power scooters
six handicapped parking permits
five... glowing...lesions!!
four spastic limbs
three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass.
On the eighth day of Christmas MS gave to me, eight stuttering brain farts
seven tricked out power scooters
six handicapped parking permits
five... glowing...lesions!!
four spastic limbs
three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass.
On the ninth day of Christmas MS gave to me, nine tingling numb sensations
eight stuttering brain farts
seven tricked out power scooters
six handicapped parking permits
five... glowing...lesions!!
four spastic limbs
three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass.
On the tenth day of Christmas MS gave to me, ten ungraceful falls
nine tingling numb sensations
eight stuttering brain farts
seven tricked out power scooters
six handicapped parking permits
five... glowing...lesions!!
four spastic limbs
three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass.
On the eleventh day of Christmas MS gave to me, eleven different medications to take daily
ten ungraceful falls
nine tingling numb sensations
eight stuttering brain farts
seven tricked out power scooters
six handicapped parking permits
five... glowing...lesions!!
four spastic limbs
three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass.
On the twelfth day of Christmas MS gave to me, twelve more months of random weird pain
eleven different medications to take daily
ten ungraceful falls
nine tingling numb sensations
eight stuttering brain farts
seven tricked out power scooters
six handicapped parking permits
five... glowing...lesions!!
four spastic limbs
three days of Solumedrol
two vision impaired eyeballs
and a painful shot in the ass!
This concludes the 78th edition and third year of the Carnival.
The next Carnival of MS Bloggers will be hosted here on January 6, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 4, 2011.
Thank you.
Thank you.
Comments for this post.
Tuesday, December 21, 2010
Happy Winter Solstice
Tomorrow will be a longer "day" then today. More sunlight anyways. But we are just moving into the true winter season. It's going to get colder and snowier still. Spring time is months away.
Last week I was awake far too early in the morning on a day I had to make my way to an appointment. Looking out my front door facing East, I was greeted by the most glorious sky. I will freely admit that I only rarely am awake for a true sunrise. When I wake up usually, the sun has already moved well beyond the housetops.
But I had to try to capture the sky as it was painted a glorious combination of pink, peach, and blue. The photo presented here is untouched. Isn't it pretty?
Then yesterday was my morning to receive the last monthly steroid boost. A good day to get it as I can hardly ever sleep the night following the initial infusion. But in contrast, I become so very exhausted that I must sleep for hours during the day. Don't know why I don't get the energy boost others talk about.
So last night, I was awake....for a very long time. I was able to witness the rare full lunar eclipse which ushered in this Winter Solstice. Last time that happened was in 1638, reporters say. I attempted to gather a few photos of the rare event with my little point-and-shoot camera.
Here are some images I captured at the beginning of the eclipse and at the height of bloody-orangey glow.
Very cool to be able to stay up all night to watch the sky. Very cold to go outside every 15 minutes to view the progress. But well worth it. Then I promptly woke up at 8am this morning for no better reason than the bladder was complaining. Perhaps I'll take another long nap this afternoon.
Last week I was awake far too early in the morning on a day I had to make my way to an appointment. Looking out my front door facing East, I was greeted by the most glorious sky. I will freely admit that I only rarely am awake for a true sunrise. When I wake up usually, the sun has already moved well beyond the housetops.
But I had to try to capture the sky as it was painted a glorious combination of pink, peach, and blue. The photo presented here is untouched. Isn't it pretty?
Then yesterday was my morning to receive the last monthly steroid boost. A good day to get it as I can hardly ever sleep the night following the initial infusion. But in contrast, I become so very exhausted that I must sleep for hours during the day. Don't know why I don't get the energy boost others talk about.
So last night, I was awake....for a very long time. I was able to witness the rare full lunar eclipse which ushered in this Winter Solstice. Last time that happened was in 1638, reporters say. I attempted to gather a few photos of the rare event with my little point-and-shoot camera.
Here are some images I captured at the beginning of the eclipse and at the height of bloody-orangey glow.
Very cool to be able to stay up all night to watch the sky. Very cold to go outside every 15 minutes to view the progress. But well worth it. Then I promptly woke up at 8am this morning for no better reason than the bladder was complaining. Perhaps I'll take another long nap this afternoon.
Happy Winter Solstice everyone!!
Sunday, December 19, 2010
Updated PML cases: 79 Tysabri patients diagnosed with PML, 16 have died
Of the available disease-modifying treatments for multiple sclerosis, Tysabri (natalizumab) has arguably been the most controversial to date. The reason for this controversy is a condition called progressive multifocal leukoencephalopathy or PML. Any patient who is trying to decide whether Tysabri is the right medication for personal use, she/he must balance the risks and benefits and how those might fit into his lifestyle or circumstances.
Of the 79 Tysabri patients who developed PML, 16 patients have died.
The number of Tysabri patients who have developed PML (progressive multifocal leukoencephalopathy) has reached 79 as of December 17, 2010 says Biogen Idec, Inc. The company also reports that an additional death among Tysabri/PML patients has occurred, bringing that total number of cases to sixteen.
"The number of PML cases is important because if the infection rate climbs too high, the drug's sales growth may drop. Regulators have said that they watch the cases, but have concluded that the benefits of the medicine to MS patients outweigh the risks. The overall global PML rate is about 0.96 per 1,000 patients, a company spokeswoman said, which still falls within the 1-in-1,000 rate previously seen in clinical trials and implied on the drug's label. But the rate has been rising, and multiple Wall Street analysts raised concern about the trend on Wednesday as the MS market is becoming increasingly competitive."
Biogen reports that as of Sept. 30, 2010, there are 55,100 patients using the drug around the world and that approximately 75,500 patients have used the drug since its launch. Of the 79 total cases of PML, 34 cases were in the United States, 40 cases were in the European Union, and 5 cases were in other areas.
"The most recent data update translates to a rate of 1.54 cases per 1,000 for patients on the drug for a year or longer, but rises to 2.05 per 1,000 for those on the drug for two years or longer. Looked at another way, the rate is about 1.48 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.38 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year."
According to these growing numbers, the death rate of Tysabri/PML patients is at 20%. I wish that we knew the condition of the other 80% of PML-affected patients. It would be helpful to know how much PML has permanently disabled them. Reports are limited. The chart below shows the number of reported PML cases in patients using Tysabri, where they live, how many have died, and the percentage of deaths among Tysabri-PML patients.
Read this post in its entirety:
Tysabri (natalizumab), PML (progressive multifocal leukoencephalopathy), and Ongoing Research
UPDATE: Biogen announces updated Tysabri/PML statistics. The total number of cases is now at 85 patients with the addition of 6 new cases reported in January 2011. The number of deaths holds at 16 patients. Of the total PML cases, 36 were in the U.S., 44 were in the European Union and five in other areas.
Of the 79 Tysabri patients who developed PML, 16 patients have died.
The number of Tysabri patients who have developed PML (progressive multifocal leukoencephalopathy) has reached 79 as of December 17, 2010 says Biogen Idec, Inc. The company also reports that an additional death among Tysabri/PML patients has occurred, bringing that total number of cases to sixteen.
"The number of PML cases is important because if the infection rate climbs too high, the drug's sales growth may drop. Regulators have said that they watch the cases, but have concluded that the benefits of the medicine to MS patients outweigh the risks. The overall global PML rate is about 0.96 per 1,000 patients, a company spokeswoman said, which still falls within the 1-in-1,000 rate previously seen in clinical trials and implied on the drug's label. But the rate has been rising, and multiple Wall Street analysts raised concern about the trend on Wednesday as the MS market is becoming increasingly competitive."
Biogen reports that as of Sept. 30, 2010, there are 55,100 patients using the drug around the world and that approximately 75,500 patients have used the drug since its launch. Of the 79 total cases of PML, 34 cases were in the United States, 40 cases were in the European Union, and 5 cases were in other areas.
"The most recent data update translates to a rate of 1.54 cases per 1,000 for patients on the drug for a year or longer, but rises to 2.05 per 1,000 for those on the drug for two years or longer. Looked at another way, the rate is about 1.48 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.38 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year."
According to these growing numbers, the death rate of Tysabri/PML patients is at 20%. I wish that we knew the condition of the other 80% of PML-affected patients. It would be helpful to know how much PML has permanently disabled them. Reports are limited. The chart below shows the number of reported PML cases in patients using Tysabri, where they live, how many have died, and the percentage of deaths among Tysabri-PML patients.
Read this post in its entirety:
Tysabri (natalizumab), PML (progressive multifocal leukoencephalopathy), and Ongoing Research
UPDATE: Biogen announces updated Tysabri/PML statistics. The total number of cases is now at 85 patients with the addition of 6 new cases reported in January 2011. The number of deaths holds at 16 patients. Of the total PML cases, 36 were in the U.S., 44 were in the European Union and five in other areas.
Friday, December 17, 2010
Glitter in the Moonlight
It's the holiday season; I'm not supposed to feel blech. It's not allowed, right?
For many years, big holidays such as Christmas have been difficult for me. Part of that is due to seasonal affective disorder and some is due to various disappointments over the years. I dread this time of year.
Yesterday I had a 4-month follow-up appointment at the neurology center. It was fairly uneventful, however I did learn that I really can't feel my left foot. When my neuro NP bent my big toe and asked which direction it was, I honestly couldn't tell. At first it felt like she was moving it side-ways, not up nor down.
The numbness in my legs is up my torso. I could barely feel the safety pin which I understand is 'supposed' to feel sharp. LOL. It was kinda, sorta sharpish near my bra strap. It's time to admit that this extent of numbness is permanent.
The swaying and balance issues are permanent. After testing the same during several visits over more than a year, it's time to accept that my appointments are not coincidentally on "bad days." This is just my new normal and adjusted baseline.
I asked about vision issues, wondering if visual disturbances ever really get better. We're going to repeat the visual evoked potentials test in January and compare the result to my original ones over five years ago. My optic discs look good upon exam, and my MRI brain scans look good, but it is most likely that there is damage somewhere behind the eyes along the optic nerve.
After asking about MS bowel issues, it is confirmed that a case of MS doesn't have to be really advanced before bowels can be affected. It is not the most common symptom, but definitely one which can be annoying and disturbing.
So to be honest with myself and readers, I really am doing rather well. I function; I look good; I can walk, talk, hear, see, think, write, teach, and smile. But when adding up all the mild and moderate symptoms, it becomes rather annoying. It is impossible to ignore that MS puts limits on what I can do.
Maybe it's really just the season. Maybe it's that spasticity has come back and causes pain. Maybe it's that I have my final pulse steroid session on Monday and I won't be getting a boost until I actually have a significant relapse or something else happens in the future.
I'm kinda looking forward to the steroids (as odd as that sounds) so that my growing joint pain will subside before I'm traveling for a week. The spasticity will probably be subdued and maybe my eyes will brighten up.
Basically I think I'm traveling through some of the typical emotions of anger and grief before acceptance can be regained again. Interesting that once we find acceptance, it doesn't guarantee we'll always feel that way.
I know that compared to many of my online friends, I am doing fantastic!! I am awesome. There is no reason to feel blah and blech. Already I feel a little bit better compared to yesterday. Tomorrow I will probably feel better still.
One thing I learned during a few years of counseling is that it is important to acknowledge feelings and allow yourself to feel them. This is helpful in taking away their disruptive power. By admitting that I feel blah, I help myself overcome it and find more peace and joy.
Maybe that is what I should focus on this week, helping myself find peace and joy within. It is not something which is limited to one day or season of the year. It is always there, within, to be nurtured and allowed to breathe.
So my wish for you this holiday season is to find the peace and joy which comes from within. Not from lights or trees, poinsettia plants or even red roses. You are your own angel. May your wings glitter in the moonlight.
For many years, big holidays such as Christmas have been difficult for me. Part of that is due to seasonal affective disorder and some is due to various disappointments over the years. I dread this time of year.
Yesterday I had a 4-month follow-up appointment at the neurology center. It was fairly uneventful, however I did learn that I really can't feel my left foot. When my neuro NP bent my big toe and asked which direction it was, I honestly couldn't tell. At first it felt like she was moving it side-ways, not up nor down.
The numbness in my legs is up my torso. I could barely feel the safety pin which I understand is 'supposed' to feel sharp. LOL. It was kinda, sorta sharpish near my bra strap. It's time to admit that this extent of numbness is permanent.
The swaying and balance issues are permanent. After testing the same during several visits over more than a year, it's time to accept that my appointments are not coincidentally on "bad days." This is just my new normal and adjusted baseline.
I asked about vision issues, wondering if visual disturbances ever really get better. We're going to repeat the visual evoked potentials test in January and compare the result to my original ones over five years ago. My optic discs look good upon exam, and my MRI brain scans look good, but it is most likely that there is damage somewhere behind the eyes along the optic nerve.
After asking about MS bowel issues, it is confirmed that a case of MS doesn't have to be really advanced before bowels can be affected. It is not the most common symptom, but definitely one which can be annoying and disturbing.
So to be honest with myself and readers, I really am doing rather well. I function; I look good; I can walk, talk, hear, see, think, write, teach, and smile. But when adding up all the mild and moderate symptoms, it becomes rather annoying. It is impossible to ignore that MS puts limits on what I can do.
Maybe it's really just the season. Maybe it's that spasticity has come back and causes pain. Maybe it's that I have my final pulse steroid session on Monday and I won't be getting a boost until I actually have a significant relapse or something else happens in the future.
I'm kinda looking forward to the steroids (as odd as that sounds) so that my growing joint pain will subside before I'm traveling for a week. The spasticity will probably be subdued and maybe my eyes will brighten up.
Basically I think I'm traveling through some of the typical emotions of anger and grief before acceptance can be regained again. Interesting that once we find acceptance, it doesn't guarantee we'll always feel that way.
I know that compared to many of my online friends, I am doing fantastic!! I am awesome. There is no reason to feel blah and blech. Already I feel a little bit better compared to yesterday. Tomorrow I will probably feel better still.
One thing I learned during a few years of counseling is that it is important to acknowledge feelings and allow yourself to feel them. This is helpful in taking away their disruptive power. By admitting that I feel blah, I help myself overcome it and find more peace and joy.
Maybe that is what I should focus on this week, helping myself find peace and joy within. It is not something which is limited to one day or season of the year. It is always there, within, to be nurtured and allowed to breathe.
So my wish for you this holiday season is to find the peace and joy which comes from within. Not from lights or trees, poinsettia plants or even red roses. You are your own angel. May your wings glitter in the moonlight.
Tuesday, December 14, 2010
Eat More Fruits, Vegetables, and Fiber
At my most recent visit to the rheumatologist, I was instructed to eat as much as 11 servings of fruits and vegetables per day. I said, “wow, that sounds like a lot!” My doctor’s response was that it was not as much as you might think when 1/2 cup counts as a serving.
Counting full and half cups of fruits and vegetables is part of a new campaign “Fruits and Veggies-More Matters” launched by the CDC. Lots of information, including tips and recipes, can be found at FruitsandVeggiesMatter.gov. When visualizing amounts of food, it may be easier to picture kitchen measuring cups, rather than guessing whether a large piece of fruit counts as one or two servings.
On the homepage of Fruits and Veggies Matter is an interactive tool which tells you how many cups of fruits and vegetables are recommended based on age and gender. For a 42 year old female who engages in a low level of physical activity, the recommendation is 1.5 cups of fruit and 2.5 cups of vegetables every day, based on an average 1800 calories/day diet.
Read this post in its entirety:
Nutrition Matters: Eat More Fruits, Vegetables, and Fiber for Better Health
Counting full and half cups of fruits and vegetables is part of a new campaign “Fruits and Veggies-More Matters” launched by the CDC. Lots of information, including tips and recipes, can be found at FruitsandVeggiesMatter.gov. When visualizing amounts of food, it may be easier to picture kitchen measuring cups, rather than guessing whether a large piece of fruit counts as one or two servings.
On the homepage of Fruits and Veggies Matter is an interactive tool which tells you how many cups of fruits and vegetables are recommended based on age and gender. For a 42 year old female who engages in a low level of physical activity, the recommendation is 1.5 cups of fruit and 2.5 cups of vegetables every day, based on an average 1800 calories/day diet.
Read this post in its entirety:
Nutrition Matters: Eat More Fruits, Vegetables, and Fiber for Better Health
Friday, December 10, 2010
What does "normal" tired feel like?
Do you ever wonder this question? I am contemplating it today. Actually, I'm not contemplating too terribly much because I'm much too tired. This week has been a doozy.
On Sunday, I actually went out shopping for some Christmas items. I'm not sure how long we spent in the first store, but it was at the second store where I admitted (at one point) that my brain was tired and I couldn't think clearly. When asked if I wanted to go home, I said no. I wanted to rest (my mind) just a bit and make a decision. Rob was very patient with me and we ended up leaving much later, after I had make my decisions and purchases.
Monday, I participated on a phone "interview" helping someone with a project. It was really a very long conversation which I was surprised to see lasted more than an hour by the time we hung up. Of course, I had kids to teach later in the day.
Tuesday was a simple day, primarily about playing with one of the items I had purchased and then teaching.
Wednesday, I had to get up early (for me) for a 9am hair appointment. I knew that it would be a long one since we were planning to do some highlights and color (yes, I'm pushing back against the gray). I left there at 11am. Then, I went back to one of Sunday's stores to ask for a gift receipt for the item I had purchased. I should have thought to get it Sunday but wasn't thinking quite clearly at the time.
After getting the extra receipts, I went to another store to view a competing item to help me decide if I wanted to return the first item or not. Nope, I'm sticking with my first choice. Then I went to the nearby pet store to find some new toys for the kiddos. After that I needed to stop at the local music store to pick up some items I promised to look for and to find selections appropriate for this spring's solo festival for the horn students of varying levels of ability.
Anyways, I finally got home sometime before 2pm, needed to eat lunch and chill, and be ready to teach at 3:30pm. I was understandably tired after all of that. I felt "normal" tired, I thought.
Yesterday, I had to get up extra early to get downtown DC to Union Station to catch a train to New Jersey. We were making good time when disaster struck. An accident had shut down Constitution Ave. and thus blocked our route to the train station. After trying to figure out which metro station we were closest too, and what it would take to get to Union station from there, I decided to just get to the train station and take the next train (an hour later). It cost me more for the ticket but I got to the destination in time to scarf some lunch very quickly before I was needed.
Then in New Jersey, I participated in an event during which I seemed just as normal and active as anybody else. Nobody could see my diseases although I talked about them. I was the perfect example of the "but you look so good" syndrome. At 5:30pm I was sitting on the train to come back to DC. I think I walked in my front door at around 8:45pm.
I felt tired last night, but today I'm extra, crazy, must be the MS or RA, insane tired. It's the - I don't even want to get up to get something to drink although I'm really thirsty and probably dehydrated - tired. It's the - I can't walk a straight line or can hardly lift my legs high enough to climb the stairs - tired. It's the - how do people do this stuff and still function - kinda tired.
So I've completely forgotten what true "normal" tired feels like. But I guess the slight bonus to this is that my legs have a gentle tingling throughout which feels kinda soothing at this point. It kinda "feels" like white noise under the skin. Ahhhhh....
On Sunday, I actually went out shopping for some Christmas items. I'm not sure how long we spent in the first store, but it was at the second store where I admitted (at one point) that my brain was tired and I couldn't think clearly. When asked if I wanted to go home, I said no. I wanted to rest (my mind) just a bit and make a decision. Rob was very patient with me and we ended up leaving much later, after I had make my decisions and purchases.
Monday, I participated on a phone "interview" helping someone with a project. It was really a very long conversation which I was surprised to see lasted more than an hour by the time we hung up. Of course, I had kids to teach later in the day.
Tuesday was a simple day, primarily about playing with one of the items I had purchased and then teaching.
Wednesday, I had to get up early (for me) for a 9am hair appointment. I knew that it would be a long one since we were planning to do some highlights and color (yes, I'm pushing back against the gray). I left there at 11am. Then, I went back to one of Sunday's stores to ask for a gift receipt for the item I had purchased. I should have thought to get it Sunday but wasn't thinking quite clearly at the time.
After getting the extra receipts, I went to another store to view a competing item to help me decide if I wanted to return the first item or not. Nope, I'm sticking with my first choice. Then I went to the nearby pet store to find some new toys for the kiddos. After that I needed to stop at the local music store to pick up some items I promised to look for and to find selections appropriate for this spring's solo festival for the horn students of varying levels of ability.
Anyways, I finally got home sometime before 2pm, needed to eat lunch and chill, and be ready to teach at 3:30pm. I was understandably tired after all of that. I felt "normal" tired, I thought.
Yesterday, I had to get up extra early to get downtown DC to Union Station to catch a train to New Jersey. We were making good time when disaster struck. An accident had shut down Constitution Ave. and thus blocked our route to the train station. After trying to figure out which metro station we were closest too, and what it would take to get to Union station from there, I decided to just get to the train station and take the next train (an hour later). It cost me more for the ticket but I got to the destination in time to scarf some lunch very quickly before I was needed.
Then in New Jersey, I participated in an event during which I seemed just as normal and active as anybody else. Nobody could see my diseases although I talked about them. I was the perfect example of the "but you look so good" syndrome. At 5:30pm I was sitting on the train to come back to DC. I think I walked in my front door at around 8:45pm.
I felt tired last night, but today I'm extra, crazy, must be the MS or RA, insane tired. It's the - I don't even want to get up to get something to drink although I'm really thirsty and probably dehydrated - tired. It's the - I can't walk a straight line or can hardly lift my legs high enough to climb the stairs - tired. It's the - how do people do this stuff and still function - kinda tired.
So I've completely forgotten what true "normal" tired feels like. But I guess the slight bonus to this is that my legs have a gentle tingling throughout which feels kinda soothing at this point. It kinda "feels" like white noise under the skin. Ahhhhh....
Tuesday, December 7, 2010
Anybody else have pouches in their colon?
Recently I learned something new about myself. Not anything extraordinary or shocking, but it does involve my health. Following a colonoscopy on Friday morning, a doctor discovered that I have diverticulosis.
What is diverticulosis?
In the lining of the colon or lower portion of the large intestine, small pouches or sacs which bulge outward can develop in weak spots of the colon wall. Each pouch is called a diverticulum. When a person has several pouches, they have the condition called diverticulosis. Uncommon in younger adults, about 10 percent of Americans older than 40 have the condition. Diverticulosis becomes more common as people age and an estimated 50 percent of Americans over the age of 60 have the condition.
What causes diverticulosis?
Diverticulosis is usually caused by chronically increased pressure and strain on the colon wall. A common contributing factor to the development of diverticulosis is constipation, something which we all have experienced at some point in our lives I imagine. Constipation may cause people to strain when passing stool during a bowel movement. The straining may cause increased pressure in the colon which contributes to the small herniations of the colon wall. Hereditary factors and lack of exercise may also be associated with diverticulosis.
I’ve learned that diverticulosis is rare in rural Asia and Africa where people regularly eat high-fiber diets. It is believed that a diet low in fiber is the primary contributing factor to the development of the condition. In Western industrialized countries, especially the United States, England, and Australia, we commonly do not eat enough foods rich in fiber.
Read this post in its entirety:
Digestive Health and Complications of a Low-Fat Diet: What is Diverticulosis?
What is diverticulosis?
In the lining of the colon or lower portion of the large intestine, small pouches or sacs which bulge outward can develop in weak spots of the colon wall. Each pouch is called a diverticulum. When a person has several pouches, they have the condition called diverticulosis. Uncommon in younger adults, about 10 percent of Americans older than 40 have the condition. Diverticulosis becomes more common as people age and an estimated 50 percent of Americans over the age of 60 have the condition.
What causes diverticulosis?
Diverticulosis is usually caused by chronically increased pressure and strain on the colon wall. A common contributing factor to the development of diverticulosis is constipation, something which we all have experienced at some point in our lives I imagine. Constipation may cause people to strain when passing stool during a bowel movement. The straining may cause increased pressure in the colon which contributes to the small herniations of the colon wall. Hereditary factors and lack of exercise may also be associated with diverticulosis.
I’ve learned that diverticulosis is rare in rural Asia and Africa where people regularly eat high-fiber diets. It is believed that a diet low in fiber is the primary contributing factor to the development of the condition. In Western industrialized countries, especially the United States, England, and Australia, we commonly do not eat enough foods rich in fiber.
Read this post in its entirety:
Digestive Health and Complications of a Low-Fat Diet: What is Diverticulosis?
Sunday, December 5, 2010
Fishing for Cats
"Claws and Paws and Teeth and Jaws!!"
That's the phrase the Rob came up with in describing the "little guys" at play. It makes me laugh each time I think, and even more strongly when I hear Rob say it with enthusiasm.
In case you are wondering, the little guys are our three feline companions. These furbabies each have their own personality, but when it's time to chase and attack objects, they are surprisingly similar. That is until playtime is over.
There is one little one who likes to get possessive of her toys. Musette takes claim and often makes it clear to whom an object belongs as evidenced by the weighting down of the "lure toy" as seen below.
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| Wonder if any |
Thursday, December 2, 2010
Carnival of MS Bloggers #77
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
What Can You Do? What Should You Know? How To Get Back Up Again!
by Diane Standiford of A Stellarlife
- Eat healthy
- Exercise any part of your body that you can
- Reach out to people, family, friends, strangers
- Discover YOU. What makes you laugh? What are your fears? What is fun?
- Laugh, educate your fears into remission, have fun!
by Diane Standiford of A Stellarlife
Take a deep breath.
The majority of people diagnosed with MS will live a long life and never need a wheelchair.
You have a disease that has warped ahead in the last 20 years to a place where there are many avenues you can take to manage it. It will be managed; you CAN do it.
Every week, new research is leading us closer to answers about MS.
You are not alone. There are support groups and many blogs written by people with MS. Join the community!
Time is on your side. MS will not kill you. "Death by Ms" is rare and if you are that bad off, then you are not reading this. (If you don't believe me, ask your doctor.)
Keeping your body in good shape is essential to living well with MS. Exercise, eat healthy, rest, follow your passion.
Don't make hasty decisions, especially when you are having a relapse. Most MS starts as relapsing/remitting, "This too shall pass."
Talk with your friends and family. They will want to help you.
Educate yourself about MS! With the Internet you have a WORLD of information, use these tools and sharpen your emotional tools.
DON'T quit your job until you have tried everything to keep it, the Americans with Disabilities Act (ADA) mandates that an employer give you reasonable accommodations. Sometimes the simplest of changes can mean being able to keep your job.
Form a good relationship with your primary care doctor. MS will NOT be responsible for every physical problem you have.
Breathe. Focus on the good things in life and go after them now. Surround yourself with things that make you happy. Help others whenever you can. Give. The return is always great.
Your new adventure awaits you! Embrace MS, it is a part of you now. There is always a chance a cure is in your future!
Start a diary, let your feelings out. It is okay to cry, to be afraid, but don't let MS define you and don't let fear be the boss of you.
Hey! Think about staring your own MS blog. It is easy to do. We will warmly welcome you!
by Jennifer Digmann
Yes, on my face.
Couldn’t have happened at a worse time. Or so I thought. Right there on a break from my class, Dan was helping me to pivot in the Anspach Hall bathroom and SMACK!
Profanity! Profanity! Profanity! And Tears … tears … tears. And that wasn’t just me. I heard profanity and tears coming from Dan too.
It was frightening, fast and so sudden. I couldn’t even lift my head off the tile. I didn’t want to even move and I was face down on a public bathroom floor. That’s how bad it hurt.
This was supposed to be a standard trip to the bathroom. Same as we had done for each Tuesday evening over the past nine weeks of the semester. I have a regularly scheduled break during my Anthropology 590 graduate class, “Gender, Culture & Society.” During this time Dan comes to the CMU campus building to help me go to the bathroom.
And it normally runs like clockwork. We get a break. We go to the bathroom. I ask if any of the women there minds if my husband comes in to help me – which they never do because women rule! –and he helps me with pivoting and transferring on and off the toilet and back into my chair.
But this night, the night before our largest speaking presentation ever, a rare miscommunication in the transfer back into my chair had me simultaneously thinking, “Timber!” and “This is going to hurt,” as I fell shoulder first into the bathroom stall and then flat on my face. Thus the imprint. For real. You can see the tile lines on my cheek!
I’m lucky that there was no blood, I didn’t break any teeth, and we were able to get help (thanks, Sarah, Dr. Brown and Josh!).
I was fine once I calmed down. Dan was too. I think I took a couple ibuprofen and sat on the couch after my professor let me go home from class early (Thanks again, Dr. Brown!).
And I geared up for the next day’s presentations with the Women’s Initiative at noon in Mt. Pleasant and the Shiawasee County MS Self-help Group later that evening in Owosso.
Speaking with Dan in front of 300 people at the Women's Initiative event (thanks for the photo, Peggy!)
Marked with the sign of the bathroom tile floor, Dan and I delivered two of our best speaking engagements the next day. We were fortunate enough to share our story and increase MS awareness, all while I was rockin’ my first-ever black eye : -)
And to be frankly honest, I sported that black eye with pride because it symbolized both the reality of my Multiple Sclerosis and my determination to not let this disease hold me down.
[Note: Jennifer's black eye has cleared up and she is busily writing her last paper of the semester.]
This concludes the 77th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on December 16, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 14, 2010.
Thank you.
Thank you.
Comments for this post.
Tuesday, November 30, 2010
New MS Patients, Solumedrol, and Conversation
Over the weekend, I was working on a couple of posts for MultipleSclerosisCentral.com. None of them are complete just yet and on Monday morning I was trying to finish at least one. I even took my computer with me to the neuro’s office to get some work done while I was tied to an IV pole, but it didn’t work.
Why was I at the neuro’s office? It was time for my monthly dose of IV Solumedrol. The infusion center was packed full. Part of that was due to patients fitting in their treatments before the Thanksgiving holiday (like me), the other part was due to the number of patients experiencing relapses.
I walked in at 9:20 AM and found only one empty chair out of six. The seventh chair was full of pillows and a couple of blankets. These are important items, so they deserve a chair of their own. LOL.
Read this post in its entirety:
Monday Morning at the Neurology Clinic: New MS Patients, Solumedrol, and Friendly Conversation
Why was I at the neuro’s office? It was time for my monthly dose of IV Solumedrol. The infusion center was packed full. Part of that was due to patients fitting in their treatments before the Thanksgiving holiday (like me), the other part was due to the number of patients experiencing relapses.
I walked in at 9:20 AM and found only one empty chair out of six. The seventh chair was full of pillows and a couple of blankets. These are important items, so they deserve a chair of their own. LOL.
Read this post in its entirety:
Monday Morning at the Neurology Clinic: New MS Patients, Solumedrol, and Friendly Conversation
Saturday, November 27, 2010
The World Keeps Spinning
Oh my goodness. What has the world come to? It has been six days since I last posted and I don't feel guilty at all.
Well, hardly anyways.
It's sad. I didn't even give you links to material I've posted on HealthCentral recently. Maybe I'll "recreate" part of the week and do just that.
Or the incomplete posts of new MS bloggers. The list is getting longer and longer and I need to get on the ball.
I'm so far behind. :)
But...the world has kept spinning and all is fine.
One holiday down, and just a couple more to go. Hope all my friends in the US had a lovely Thanksgiving.
We had a nice dinner. Also played a good game of cards between turkey and apple pie. I insisted that we do something besides watch TV to entertain ourselves while we were digesting. It was fun.
Did anybody go out shopping at 3AM for the Black Friday specials? Not me!!!
I was nicely asleep at that time of day and planned to do so late into the morning. However, an incident occurred during which two people rolled over in bed at just the same time causing the unfortunate meeting of an elbow and an eye. That kinda cut short the cozy sleeping atmosphere and required some ice.
Today I should buckle down and do some actual writing. At least that or get my Christmas shopping done online.
Oh, and it just occurred to me, I should go downstairs and decorate the music studio. We have only three more lessons (weeks of lessons) before the official winter break and it would be nice to look festive.
I also need to decide what to do for the kids. Every year I have given the students a small gift at Christmas time. Nothing extravagant, but something tasty or fun. I may actually have to go to a store for this task.
Now my list of "to do's" is getting longer. I should probably stop now before I think of the many other things which need to go on that list.
So that's it for now. I hope that everybody did have a nice Thanksgiving and are enjoying the weekend. The sun is out and although it is cold, it looks to be a lovely day.
P.S. How many times can one person use the word "lovely" in one post? Believe it or not, I edited out a few occurrences upon re-reading. Must be the word for the day....Lovely.
Well, hardly anyways.
It's sad. I didn't even give you links to material I've posted on HealthCentral recently. Maybe I'll "recreate" part of the week and do just that.
Or the incomplete posts of new MS bloggers. The list is getting longer and longer and I need to get on the ball.
I'm so far behind. :)
But...the world has kept spinning and all is fine.
One holiday down, and just a couple more to go. Hope all my friends in the US had a lovely Thanksgiving.
We had a nice dinner. Also played a good game of cards between turkey and apple pie. I insisted that we do something besides watch TV to entertain ourselves while we were digesting. It was fun.
Did anybody go out shopping at 3AM for the Black Friday specials? Not me!!!
I was nicely asleep at that time of day and planned to do so late into the morning. However, an incident occurred during which two people rolled over in bed at just the same time causing the unfortunate meeting of an elbow and an eye. That kinda cut short the cozy sleeping atmosphere and required some ice.
Today I should buckle down and do some actual writing. At least that or get my Christmas shopping done online.
Oh, and it just occurred to me, I should go downstairs and decorate the music studio. We have only three more lessons (weeks of lessons) before the official winter break and it would be nice to look festive.
I also need to decide what to do for the kids. Every year I have given the students a small gift at Christmas time. Nothing extravagant, but something tasty or fun. I may actually have to go to a store for this task.
Now my list of "to do's" is getting longer. I should probably stop now before I think of the many other things which need to go on that list.
So that's it for now. I hope that everybody did have a nice Thanksgiving and are enjoying the weekend. The sun is out and although it is cold, it looks to be a lovely day.
P.S. How many times can one person use the word "lovely" in one post? Believe it or not, I edited out a few occurrences upon re-reading. Must be the word for the day....Lovely.
Tuesday, November 23, 2010
Avoid Exhaustion During the Holidays
Are you ready for the holiday season? Is everything shopped, shipped, and wrapped? Have you decorated, cooked, partied, and cleaned up? Are you traveled out, partied out, and fatigued-ly down for the count?
WAAAAAAIIIIIIIIIIITTT!!!.....Hold on, it’s not January yet. We’ve only just begun the holidays. So far, we’ve had the Canadian Thanksgiving Weekend and Halloween. Next up, this week, is the American Thanksgiving family/food/football/shopping extravaganza. Then Chanukah, Christmas, and New Year’s.
Six weeks of go-go-go, high expectations, exhaustion, shopping, gatherings, more exhaustion, chronic illness, and an apparent no-end to the need to have fun, be merry, and to celebrate with an overabundance of, well, everything
Did I mention exhaustion? An excess of that, too, if we’re not careful.
Those of us who live with chronic illness, especially rheumatoid arthritis, know that the holidays can be anything but merry if we are not careful to pace ourselves and be smart along the way. The best piece of advice I could give is to take care of yourself first and foremost.
Read this post in its entirety:
Living Well with Rheumatoid Arthritis During the Holidays - Avoid Exhaustion and Have More Fun
WAAAAAAIIIIIIIIIIITTT!!!.....Hold on, it’s not January yet. We’ve only just begun the holidays. So far, we’ve had the Canadian Thanksgiving Weekend and Halloween. Next up, this week, is the American Thanksgiving family/food/football/shopping extravaganza. Then Chanukah, Christmas, and New Year’s.
Six weeks of go-go-go, high expectations, exhaustion, shopping, gatherings, more exhaustion, chronic illness, and an apparent no-end to the need to have fun, be merry, and to celebrate with an overabundance of, well, everything
Did I mention exhaustion? An excess of that, too, if we’re not careful.
Those of us who live with chronic illness, especially rheumatoid arthritis, know that the holidays can be anything but merry if we are not careful to pace ourselves and be smart along the way. The best piece of advice I could give is to take care of yourself first and foremost.
Read this post in its entirety:
Living Well with Rheumatoid Arthritis During the Holidays - Avoid Exhaustion and Have More Fun
Sunday, November 21, 2010
November Update - RA, MS, Weight Loss, and Holidays
Correction - Jen is another person who has commented positively on the weight loss. Thanks, Jen, you rock!!
Thursday, November 18, 2010
Carnival of MS Bloggers #76
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Fall Inspiration, MS Paradoxes, Bowel Management
by Lisa Emrich of Brass and Ivory
Colorful leaves have been falling to the ground for weeks. Rainfalls have drenched the ground. The combination has left a gorgeous 'painting' upon my front sidewalk. The gray stone is etched with images of leaves now blown away on the wind.
Nature is truly beautiful. In fact, the universe works in glorious ways.
I am often the beneficiary of forces which keep my life balanced and moving forward, always leaving a smile on my heart.
Read this excerpt from my Monday's post on MyRACentral:
My voice has gotten stronger over the years since disease has moved in. I used to be a shy person who never spoke up or tried to draw attention to myself. However, I was fairly comfortable when I had a musical instrument at my hands to speak for me.Many times in my life, I have experienced a minor disappointment, such as a student quitting lessons, only to have two new potential students call the next day asking about lessons.
Lately, I’ve not been performing music on stage as frequently, but I have been using my voice to speak to people....
So Monday I mention publicly that I haven't been performing as much lately. Then Tuesday, I receive an email offering me the opportunity to perform in a concert this Sunday. Unfortunately one rehearsal is scheduled on Saturday morning, during the very same time that I have a prior commitment. I tell the contractor about this conflict, but mention that I am available for the other services (rehearsals and performance) if he still needs me. The contractor asks me to reserve those other dates, just in case.
Thursday, I was traveling out of town to speak on a panel of health activists at a conference. While at the event, I happened to meet up with someone and we had a long conversation during which I talked about being a musician. He asked about the types of groups I play with and I mention my favorite gig - performing with the National Gallery of Art Orchestra. I even mention that they have a concert this coming Sunday.
After leaving the conference and sitting on the train coming home, I get a chance to check my email. What do I find? The confirmation that I am needed to perform with the NGA orchestra this Sunday although I will miss one of three rehearsals.
In general with all of the traveling I've been doing, I have been practicing less. My playing 'chops' are a bit mushy and out of shape (to be honest). I was almost relieved that I might not be able to play this concert but not for the reason of turning down the opportunity.
However, I am needed to play. I need to play. I need to be able to play. I spend some time Thursday night exercising my lungs and chest, breathing into the horn. Coaxing a warm sound from the cold metal, vibrations traveling upon the air. Praying that the body takes over and demonstrates more strength than I should be allowed to expect with the neglect it has suffered.
Friday (today) I go to rehearsal, music unseen awaiting me on the music stand. I find music from composers unknown, horn parts both exposed and transparent. Any wobbles or mishaps will be glaringly apparent.
But then rehearsal begins. The lips cooperate, the abs stay strong and firm. The blend of sounds created by different instruments reminds me of the falling colorful leaves outside. I breathe in the warm air of beautiful music. It feels good to my body. Good for my soul.
I needed this gentle reminder from the universe that I really am a musician, an artist deep down. Just as nature has left a piece of art on my sidewalk, the universe continues to color my life with surprises and affirmations. For this, I am eternally grateful.
by Blindbeard of Blindbeard's Multiple Sclerosis Blog
Right now I can think of 2 major paradoxes of MS. I'm sure there are more, but these are the 2 that are torturing me at the moment.
1. I'm always tired but I can never get any sleep. Sure, I sleep for about 5-6 hours a night, and sometimes I can squeeze in an hour nap, but more often I can't get any decent sleep. I probably wouldn't even get those 5-6 sub par hours of sleep at night if my night meds didn't knock me out. Even in the haze of my night drugs, I still get up 2-3 times to pee each night. I have cut down all liquids after 6 pm, but my bladder still wants me to get up to drain those 3 drops that it has produced in the 2 hours since my last bathroom visit. I wake up throughout the night and check the time to see how much sleep I've gotten since the last time I checked the clock. It's never as much as I had hoped to see. And lately, I have been getting up in the 3's instead of the 4's as I used to in the days of yore. I try and stay in bed until 4, but it is a struggle. One morning I spent 25 minutes messing with the dogs before I had to raise the white flag and get out of bed. In those 25 minutes I got the dogs so wound up by plucking hairs off their fluffy buns and trying to stick them up their noses, that it was get out of bed or risk being covered in stinky dog spit. I chose to get up with only 75% of my body covered in stinky dog spit. I didn't want the dogs to start plucking hairs off my fluffy buns and try to stick them up my nose. I can dish it out but I can't take it.
2. My MS Hug squeezes me so tight that the only way to get any relief is to wear something tighter. Across my back and chest, right where a bra strap goes, is a line of pain and tightness that is only made bearable by squeezing the sh*t out of it. I have been wearing my tightest cast iron sports bra to help ease the pain. It is so supportive that I could use a jackhammer all day and not get the slightest jiggle out of my unmentionables. Even now, I have an Ace bandage wrapped so tightly around my chest that I can't draw a deep breath, but if I don't wear it, I can't draw a deep breath from the pain and tightness from the hug. I have Sugarbowl and Princess beat on my back and rub it as hard as they can. The pure ecstasy from that makes me moan and groan like I'm in the deepest throes of passion -- not exactly something I want to do with my sister and niece. They are good sports about it and take turns so one can rest her arm while the other beats the crap out of me. Sometimes abuse feels sooooo good! Sugarbowl is the best when it comes to any MS related help I need. She has the arm support thing down just right. She understands that I need a strong arm that I grab, not grabbing my arm like my mom does. My mom grabs a hold of my arm and runs off, dragging me behind. Sugarbowl lets me take her arm and lets me set the pace. You would think that a woman who works in a nursing home would know better than to drag a gimp along, but she hasn't figured that out yet. Sugarbowl also has the beating of my back down to a science. She knows to work it across the line of pain with a combination of hard rubs and deep pounding of her fists. I was in so much pain the other day, but she had to go to work, and I wished I could afford to pay her to stay home and work me over like she was tenderizing meat. Alas, I could not afford to have her stay home so I wore a corset of Ace bandages all day, waiting for her to get back home and abuse me some more.
Like I said, these are the only 2 paradoxes that come to mind right now, only because they are the 2 that won't let me forget they exist. If you have others, please let me know. I'm always interested in others' sufferings, even though I feel like I'm running a huge risk by asking. I'm afraid that my body will decide that it needs to add those problems to my already impressive repertoire of pain and agony.
by Diane of A Stellarlife
Constipation affects many people with multiple sclerosis. I read all the "...most of the people..." symptoms as soon as I got my diagnosis and began my planning.
All my life I had been very regular. Up in the morning, deposit in the loo, off for a run, home for my day to begin. Even as a child, up in the morning, loo, on with day. I took it for granted. Never imagined anyone else had a problem. Then I saw a photo of my uncle Arthur sitting on the john, chin in hand and written on the back was: "The Thinker." My questions about why that was so funny led to my first understanding that for some a daily quick deposit is not so quick.
Then I read "the word" in an MS pamphlet. Next I read how to avoid this problem, just in case it struck me. I could understand how easily it might happen, since our ability to move becomes compromised. When I needed my first scooter, I experienced the big C. (Well, I DID experience Cancer at that time, but for this story that "C" is constipation.
WARNING GRAPHIC WORDS AHEAD
I no longer found the morning dump so reliable and I learned (after 40 years) that the word my mother taught me was "Grunty", NOT "Grunny." Imagine my shock and embarrassment. I had never needed to "grunt" before, but I certainly heard that a lot in my work place restroom. (I kept asking friends, "Are they SICK?" But, learned it was expected during most deposits. SHOCK) So, then I had to take action.
First I analyzed my stools. (I warned you--this is not for the meek.), and noticed they were very dark. Dark and hard as a rock. I then examined my diet. Yes, eating enough fruits, vegetables, whole grains...so I increased them all. No change. I swore Mr. Hankey was hard as iron. LIGHT BULB MOMENT! My multi-vitamin was IRON PLUS! I thought that would be good for my MS. Switched to non-iron. Started reading labels of all the cereals and food I ate "iron-enriched" UGH! I would probably explode in my next MRI!!
After a month of no extra iron, my stools returned to normal! But, moving the bowels was still not quite right. I remembered reading in Katherine Hepburn's autobiography that she had something called, "Psyllium," every day and she started her day with a bowel movement and dip in her lake. I told this to my partner, who laughed and explained that was what Metamucil was.
AH! I had seen many ads for this Metamucil stuff and although I lacked a lake, I would take it every day like my hero-actress (heroine-actor? eesch) Kate. I began. Not much happened. I called my doctor, "Could I take a higher dose?" He agreed that might do the trick.
While I didn't like the consistency or color (orangish) of my poo (I WARNED YOU) I was once again going very easily. Too easily. It would come too fast and without warning. What a messy situation for someone using a walker and unable to run to the loo. I was starting to get discouraged. Then, another light bulb---my belief was that simply drinking all the water necessary for the Metamucil dose was way more water than I'd ever drank at one time---what if I upped my water to that level and dropped the psyllium? My fiber intake had been enough for many years...
It worked. My bowels now move daily and are of perfect color and consistency. I can even control what days I might want to hold off (like for doctor appts.) and up the next days water. Such a simple fix. I still have a nervous bowel---if I am anxious about something (like a visit from strangers) all bets are off and I can't ALWAYS make it in time to the loo, now that I must use a power chair, slow moving lift chair, transfer---but I am getting better each year at knowing when to start heading for the loo.
Yes, I discussed this with my doctors. The nasty neuro I dumped, explained how MS effects the bowels and she showed me a poster on her wall that points out all the nerves there--wow! Who knew? She offered NO solutions or suggestions. My primary guy was his usual, "That is interesting." He is still learning. AND he is open to anything. He KNOWS he is not God. He also knows ME and how I experiment on myself. My current neuro just brushed me off as usual. She doesn't even see me anymore--has shoved me onto her rehab doc. (I refused to be scared by her dire predictions for me and refused her drugs of choice. She hates the sight of me.)
So...water, water, water, every other day 64oz, 32+ in between. Looking back, I really don't think this is MS related for me at all. As a child I rarely drank and got my water from food, hense, I was over-weight. When I got a handle on my weight, I began drinking water whenever I felt hungry. I was not hungry, I was thirsty. Since moving became difficult, I lowered my water intake without realizing it. (To avoid extra trips to loo.)
When people tell me they just got DX MS, I tell them to drink more water. Now, with the idea that iron is backing up across the blood-brain barrier, I wonder if that hurt me.
Too much IRON BAD. WATER GOOD. True for just about everyone!
This concludes the 76th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on December 2, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 30, 2010.
Thank you.
Thank you.
Comments for this post.
Of the 75 Tysabri patients who developed PML, 15 patients have died to date.
The number of Tysabri patients who have developed PML (progressive multifocal leukoencephalopathy) has reached 75 as of November 2, 2010 says Biogen Idec, Inc. The company also reports that an additional death among Tysabri/PML patients has occurred, bringing that total number of cases to 15.
Source: Multiple Sclerosis Resource Centre and NASDAQ Copyright (c) 2010 Dow Jones & Company, Inc. (18/11/10)
Edited to Add:
The distribution of PML cases and number of deaths reported by Biogen and/or FDA is as follows:
Month reported; Total # PML cases; # in USA, # in Europe, Other; # Deaths
Nov 2010 - 75 total - 33; 38; 4 - 15 deaths
Oct 2010 - 70 total - 29; 37; 4 - 14 deaths
Sep 2010 - 68 total - 28; 36; 4 - 14 deaths
Aug 2010 - 63 total - 25, 34; 4 - 12 deaths
July 2010 - 58 total - 22; 32; 4 - 12 deaths
June 2010 - 55 total - 20; 32; 3 - 11 deaths
May 2010 - 49 total - 19; 27; 3 - 11 deaths
April 2010 - 46 total - ?; ?; ? - 11 deaths
Mar 2010 - 42 total - 15; 24; 3 - 9 deaths
Feb 2010 - 35 total - 11; 21; 3 - 8 deaths
Jan 2010 - 31 total - 10; 19; 2 - 8 deaths
Nov 2009 - 27 total - ?; ?; ? - 5 deaths
Sep 2009 - 24 total - 8; 16; 0 - 4 deaths
July 2009 - 11 total - 3; 8; 0 - 1 death
Here is the Morning Equity Briefing published on Davy Research website regarding the new PML cases and their impact on Tysabri usage.
Elan Corp (ELN US)
Monthly safety update on Tysabri
Jack Gorman
Closing Price: $5.55 Rating: Outperform 30/06/09
FACTS: The latest safety update on Tysabri was released last night (November 16th). Five new PML cases were confirmed during October and this brings the total to 75. Four of the cases were in the US, bringing the total there to 33. There have been 38 cases in the EU and four in the rest of the world. Fifteen of the 75 patients (20%) with PML have died.
ANALYSIS: The new cases have increased the overall incidence of PML in those patients exposed to Tysabri to 0.96 per 1,000 from 0.91 per 1,000. Observing the data by treatment epoch, the new cases look to be in patients with at least 25 infusions.
Distribution of PML patients by treatment epoch has stayed broadly consistent for some months now (note that all data are per 1,000 patients exposed). For 1-12 months, the rate remains at 0.01, indicating little or no PML. For 13-24 months, the rate is 0.37 compared to 0.38 previously. For 25-36 months, the incidence rate remains highest at 1.49, up from 1.44. The 37-48 month increased from 0.93 to 1.01 but remains lower than the 25-36 month cohort.
The data also outline, to 95% statistical confidence levels, what the estimated upper and lower bounds may reach for each of the treatment epochs. There is little change in the mix here and it continues to hover close to 2.0 for the longer durations.
DAVY VIEW: We would not expect that this monthly data will materially change physicians' or regulators’ views on Tysabri’s risk/benefit profile, as there looks to be no sharp increase in either the actual PML rate or the statistical upper bounds of incidence.
UPDATE: Biogen announces updated Tysabri/PML statistics. The total number of cases is now at 85 patients with the addition of 6 new cases reported in January 2011. The number of deaths holds at 16 patients. Of the total PML cases, 36 were in the U.S., 44 were in the European Union and five in other areas.
"The number of PML cases is important because if the infection rate climbs too high, the drug's sales growth may drop. Regulators have said that they watch the cases, but have concluded that the benefits of the medicine to MS patients outweigh the risks.Biogen reports that as of Sept. 30, 2010, there are 55,100 patients using the drug around the world and that approximately 75,500 patients have used the drug since its launch. Of the 75 total cases of PML, 33 cases were in the United States, 38 cases were in the European Union, and 4 cases were in other areas.
The overall global PML rate is about 0.96 per 1,000 patients, a company spokeswoman said, which still falls within the 1-in-1,000 rate previously seen in clinical trials and implied on the drug's label. But the rate has been rising, and multiple Wall Street analysts raised concern about the trend on Wednesday as the MS market is becoming increasingly competitive."
"The most recent data update translates to a rate of 1.49 cases per 1,000 for patients on the drug for a year or longer, but rises to 1.97 per 1,000 for those on the drug for two years or longer.According to these growing numbers, the death rate of Tysabri/PML patients is at 20%. I wish that we knew the condition of the other 80% of PML patients. Unfortunately, I do not know the breakdown of the location of the 15 PML-related deaths.
Looked at another way, the rate is about 1.49 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.37 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year."
Source: Multiple Sclerosis Resource Centre and NASDAQ Copyright (c) 2010 Dow Jones & Company, Inc. (18/11/10)
Edited to Add:
The distribution of PML cases and number of deaths reported by Biogen and/or FDA is as follows:
Month reported; Total # PML cases; # in USA, # in Europe, Other; # Deaths
Nov 2010 - 75 total - 33; 38; 4 - 15 deaths
Oct 2010 - 70 total - 29; 37; 4 - 14 deaths
Sep 2010 - 68 total - 28; 36; 4 - 14 deaths
Aug 2010 - 63 total - 25, 34; 4 - 12 deaths
July 2010 - 58 total - 22; 32; 4 - 12 deaths
June 2010 - 55 total - 20; 32; 3 - 11 deaths
May 2010 - 49 total - 19; 27; 3 - 11 deaths
April 2010 - 46 total - ?; ?; ? - 11 deaths
Mar 2010 - 42 total - 15; 24; 3 - 9 deaths
Feb 2010 - 35 total - 11; 21; 3 - 8 deaths
Jan 2010 - 31 total - 10; 19; 2 - 8 deaths
Nov 2009 - 27 total - ?; ?; ? - 5 deaths
Sep 2009 - 24 total - 8; 16; 0 - 4 deaths
July 2009 - 11 total - 3; 8; 0 - 1 death
Here is the Morning Equity Briefing published on Davy Research website regarding the new PML cases and their impact on Tysabri usage.
Elan Corp (ELN US)
Monthly safety update on Tysabri
Jack Gorman
Closing Price: $5.55 Rating: Outperform 30/06/09
FACTS: The latest safety update on Tysabri was released last night (November 16th). Five new PML cases were confirmed during October and this brings the total to 75. Four of the cases were in the US, bringing the total there to 33. There have been 38 cases in the EU and four in the rest of the world. Fifteen of the 75 patients (20%) with PML have died.
ANALYSIS: The new cases have increased the overall incidence of PML in those patients exposed to Tysabri to 0.96 per 1,000 from 0.91 per 1,000. Observing the data by treatment epoch, the new cases look to be in patients with at least 25 infusions.
Distribution of PML patients by treatment epoch has stayed broadly consistent for some months now (note that all data are per 1,000 patients exposed). For 1-12 months, the rate remains at 0.01, indicating little or no PML. For 13-24 months, the rate is 0.37 compared to 0.38 previously. For 25-36 months, the incidence rate remains highest at 1.49, up from 1.44. The 37-48 month increased from 0.93 to 1.01 but remains lower than the 25-36 month cohort.
The data also outline, to 95% statistical confidence levels, what the estimated upper and lower bounds may reach for each of the treatment epochs. There is little change in the mix here and it continues to hover close to 2.0 for the longer durations.
DAVY VIEW: We would not expect that this monthly data will materially change physicians' or regulators’ views on Tysabri’s risk/benefit profile, as there looks to be no sharp increase in either the actual PML rate or the statistical upper bounds of incidence.
UPDATE: Biogen announces updated Tysabri/PML statistics. The total number of cases is now at 85 patients with the addition of 6 new cases reported in January 2011. The number of deaths holds at 16 patients. Of the total PML cases, 36 were in the U.S., 44 were in the European Union and five in other areas.
Tuesday, November 16, 2010
Conversations from the Studio
November 15, 2010
Setting: Horn Student T who is in 5th grade and myself, the horn teacher. T is very smart and quick to learn, but sometimes is challenging to keep on task.
T: So how long have you played the french horn?
Me: I started playing horn in 6th grade.
T: How long is that?
Me: Let's see. I guess you turn 12 in 6th grade, right?
T: A-huh
Me: So.......I've been playing the horn for 30 years.
T: You're 42!?
Me: Yes, I am. Wow, 30 years is a long time isn't it? I hadn't thought of it that way until you asked. I guess I've been playing for a very long time.
Me: Now let's get back to work.
Kids are often curious about the things which might be "taboo" to talk about. Reminds me of when I was student teaching. We always went by our last names and it seemed to be the kids' personal challenge to discover what your first name was. So much time was spent before or after class shooting down the clever inquiries.
As long as it's said with respect, my students can call me by first name, last name, title, or any combination. Names don't matter so much. Knowing how old I am doesn't matter so much. Developing an open relationship in which kids know that their questions will be answered directly and that it's ok to ask them certainly does matter.
Next time, the question from T may be about how the horn works a certain way, or why f# always has to come first in the key signature, or any number of questions. Curiosity is important when studying music. Now if only T would practice more at home, his parents and I would each be very excited. ;-)
Setting: Horn Student T who is in 5th grade and myself, the horn teacher. T is very smart and quick to learn, but sometimes is challenging to keep on task.
T: So how long have you played the french horn?
Me: I started playing horn in 6th grade.
T: How long is that?
Me: Let's see. I guess you turn 12 in 6th grade, right?
T: A-huh
Me: So.......I've been playing the horn for 30 years.
T: You're 42!?
Me: Yes, I am. Wow, 30 years is a long time isn't it? I hadn't thought of it that way until you asked. I guess I've been playing for a very long time.
Me: Now let's get back to work.
Kids are often curious about the things which might be "taboo" to talk about. Reminds me of when I was student teaching. We always went by our last names and it seemed to be the kids' personal challenge to discover what your first name was. So much time was spent before or after class shooting down the clever inquiries.
As long as it's said with respect, my students can call me by first name, last name, title, or any combination. Names don't matter so much. Knowing how old I am doesn't matter so much. Developing an open relationship in which kids know that their questions will be answered directly and that it's ok to ask them certainly does matter.
Next time, the question from T may be about how the horn works a certain way, or why f# always has to come first in the key signature, or any number of questions. Curiosity is important when studying music. Now if only T would practice more at home, his parents and I would each be very excited. ;-)
Friday, November 12, 2010
Nature's Glorious Gifts, Like Music for the Soul
Colorful leaves have been falling to the ground for weeks. Rainfalls have drenched the ground. The combination has left a gorgeous 'painting' upon my front sidewalk. The gray stone is etched with images of leaves now blown away on the wind.
Nature is truly beautiful. In fact, the universe works in glorious ways.
I am often the beneficiary of forces which keep my life balanced and moving forward, always leaving a smile on my heart.
Read this excerpt from my Monday's post on MyRACentral:
My voice has gotten stronger over the years since disease has moved in. I used to be a shy person who never spoke up or tried to draw attention to myself. However, I was fairly comfortable when I had a musical instrument at my hands to speak for me.Many times in my life, I have experienced a minor disappointment, such as a student quitting lessons, only to have two new potential students call the next day asking about lessons.
Lately, I’ve not been performing music on stage as frequently, but I have been using my voice to speak to people....
So Monday I mention publicly that I haven't been performing as much lately. Then Tuesday, I receive an email offering me the opportunity to perform in a concert this Sunday. Unfortunately one rehearsal is scheduled on Saturday morning, during the very same time that I have a prior commitment. I tell the contractor about this conflict, but mention that I am available for the other services (rehearsals and performance) if he still needs me. The contractor asks me to reserve those other dates, just in case.
Thursday, I was traveling out of town to speak on a panel of health activists at a conference. While at the event, I happened to meet up with someone and we had a long conversation during which I talked about being a musician. He asked about the types of groups I play with and I mention my favorite gig - performing with the National Gallery of Art Orchestra. I even mention that they have a concert this coming Sunday.
After leaving the conference and sitting on the train coming home, I get a chance to check my email. What do I find? The confirmation that I am needed to perform with the NGA orchestra this Sunday although I will miss one of three rehearsals.
In general with all of the traveling I've been doing, I have been practicing less. My playing 'chops' are a bit mushy and out of shape (to be honest). I was almost relieved that I might not be able to play this concert but not for the reason of turning down the opportunity.
However, I am needed to play. I need to play. I need to be able to play. I spend some time Thursday night exercising my lungs and chest, breathing into the horn. Coaxing a warm sound from the cold metal, vibrations traveling upon the air. Praying that the body takes over and demonstrates more strength than I should be allowed to expect with the neglect it has suffered.
Friday (today) I go to rehearsal, music unseen awaiting me on the music stand. I find music from composers unknown, horn parts both exposed and transparent. Any wobbles or mishaps will be glaringly apparent.
But then rehearsal begins. The lips cooperate, the abs stay strong and firm. The blend of sounds created by different instruments reminds me of the falling colorful leaves outside. I breathe in the warm air of beautiful music. It feels good to my body. Good for my soul.
I needed this gentle reminder from the universe that I really am a musician, an artist deep down. Just as nature has left a piece of art on my sidewalk, the universe continues to color my life with surprises and affirmations. For this, I am eternally grateful.
Thursday, November 11, 2010
Pepsi Refresh Grand: Vote for Non-Mainstream MS Research Institute
The Neurologique Foundation, a nonprofit organization dedicated to patient-centered care, education and research, is applying for a Pepsi Refresh Grant in the amount of $250,000 to Establish a Non-Mainstream MS Research Institute: CCSVI, LDN, etc. The director of Neurologique, Dr. Daniel Kantor, is "committed to developing non-mainstream approaches focused on pverwhelming patient desire for new and innovative approaches to treating MS (Multiple Sclerosis)."
Voting is Open through November 30, 2010.
Goals:
- To establish a non-mainstream MS research institute
- To promote patient involvement in research goals
- To raise awareness among neurologists concerning alternate approaches
- To act as a model for other autoimmune disease states
Overview:
Multiple Sclerosis (MS) affects over 450,000 Americans, yet there is no cure. While there have been advances in mainstream treatments of MS, there is an outcry among patients for the development of other treatment avenues. Recent discoveries suggest that non-mainstream approaches may be beneficial in developing treatments and an eventual cure.
A non-mainstream MS research institute would allow patient input into exciting ways of treating MS. A few examples include CCSVI and LDN. Research into these treatments would allow for more definitive therapies and eventual adoption and acceptance by treating neurologists.
All research needs funding, and the Pepsi Refresh Everything Grant may help expand interest in this exciting new field of patient-centered research. It is only through well designed research that people with MS can have readily accessible care that the entire MS community deserves.
Deliverables:
A non-mainstream MS research institute would allow patient input into exciting ways of treating MS. A few examples include CCSVI and LDN. Research into these treatments would allow for more definitive therapies and eventual adoption and acceptance by treating neurologists.
All research needs funding, and the Pepsi Refresh Everything Grant may help expand interest in this exciting new field of patient-centered research. It is only through well designed research that people with MS can have readily accessible care that the entire MS community deserves.
Deliverables:
- Design of clinical trials
- Input from patients
- Public awareness campaign
How will the 250K be Used?
- $55,000 - Research coordination
- $175,000 - Conduct research trial
- $20,000 - Public awareness campaign (patients, neurologists, legislators)
Message from Dr. Kantor:
Voting is Open through November 30, 2010.
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