Today I started a new medication called Gilenya. This will be my 4th disease modifying medication (but who's counting?) and the cool part is that THIS one does not involve any needles. As a bonus, the pill is a wonderful size that I can manage to swallow easily. Due to significant reduction in heart rate following the first dose, the FDA requires that the first dose be administered at the providers office. So I checked in this morning at 8:15, had an ECG, swallowed the pill, and was monitored with frequent vital signs for six hours. One more ECG was done to confirm all was well and finally at 3:15 PM I was given the green light to go home.
Needles.
I'm a nurse so they shouldn't bug me right? Well I'm not too keen on them being stuck in me, THANK YOU. When I started injectables in 2004, Avonex still sent the large needles with the syringes. I felt every bit of that needle going in and coming out. It was better when they grew a heart and provided smaller needles but I still groaned when injection day rolled around. Rebif has the cutest little painless needles but the medication felt like acid being injected into my skin. Again, much groaning took place come injection day. I welcomed the Tysabri infusions as I already knew what frequent IV infusions was like thanks to my many rounds of IV steroids. But that was a short lived ride due to those pesky neutralizing antibodies my body started making to the drug. Sigh.
I could write a book about the horrors of my past with each of those medications, but instead, I'll focus on my hope for this new medication.
My hope is that the most painful part of being on this medication is over and that I don't have to go through the full day of observation again. My hope is that I won't experience uncomfortable side effects as before. My hope is that this medication will halt the disease progression. And my guarded hope is that it will give me some restoration.
My little girl is so cute. She sees a picture from more than a few years ago and excitedly exclaims, "look mommy, you're standing!". Yes, I say, do you remember when I could stand? Do you remember when I could walk? "No," she says softly, "but someday your legs will work again.". Hmmm. You think so, huh? "Yes, don't worry mommy.". From the mouths of babes!
Thursday, October 18, 2012
Thursday, August 9, 2012
Mommy's Lap
Some pictures just don't need captions. There is nothing like Mom's lap no matter who you are.
These pictures were taken immediately after she gave birth. The mare laid down, and then he trotted around and crawled right up into her lap. (Photo by Renee Sigel)
This picture and story made me smile today.
As hard as I try to keep a positive outlook on life, there are times when I am not so successful. From time to time I grow jealous, sad, and a little tearful when I see another mom walk hand in hand with her child. Or playing in the sand. Or frolicking in the grass. Or snow. How I long to have that.
But I have something else to offer. No matter what and no matter where, I always have a lap to crawl up into. And arms to wrap into a big hug. Now that's GOLDEN!
These pictures were taken immediately after she gave birth. The mare laid down, and then he trotted around and crawled right up into her lap. (Photo by Renee Sigel)
This picture and story made me smile today.
As hard as I try to keep a positive outlook on life, there are times when I am not so successful. From time to time I grow jealous, sad, and a little tearful when I see another mom walk hand in hand with her child. Or playing in the sand. Or frolicking in the grass. Or snow. How I long to have that.
But I have something else to offer. No matter what and no matter where, I always have a lap to crawl up into. And arms to wrap into a big hug. Now that's GOLDEN!
Friday, July 20, 2012
Multiple Sclerosis Drug Doesn’t Prevent Onset of Disability, Study Finds
Retrieve the article by clicking the link below. JAMA has provided a PDF version as well.
http://jama.jamanetwork.com/article.aspx?articleid=1217239
Original Contribution
July 18, 2012
Association Between Use of Interferon Beta and Progression of Disability in Patients With Relapsing-Remitting Multiple Sclerosis
Afsaneh Shirani, MD; Yinshan Zhao, PhD; Mohammad Ehsanul Karim, MSc; Charity Evans, PhD; Elaine Kingwell, PhD; Mia L. van der Kop, MSc; Joel Oger, MD, FRCPC; Paul Gustafson, PhD; John Petkau, PhD; Helen Tremlett, PhD
Context: Interferon beta is widely prescribed to treat multiple sclerosis (MS); however, its relationship with disability progression has yet to be established.
Objective: To investigate the association between interferon beta exposure and disability progression in patients with relapsing-remitting MS.
Design, Setting, and Patients: Retrospective cohort study based on prospectively collected data (1985-2008) from British Columbia, Canada. Patients with relapsing-remitting MS treated with interferon beta (n = 868) were compared with untreated contemporary (n = 829) and historical (n = 959) cohorts.
Main Outcome Measures: The main outcome measure was time from interferon beta treatment eligibility (baseline) to a confirmed and sustained score of 6 (requiring a cane to walk 100 m; confirmed at >150 days with no measurable improvement) on the Expanded Disability Status Scale (EDSS) (range, 0-10, with higher scores indicating higher disability). A multivariable Cox regression model with interferon beta treatment included as a time-varying covariate was used to assess the hazard of disease progression associated with interferon beta treatment. Analyses also included propensity score adjustment to address confounding by indication.
Results: The median active follow-up times (first to last EDSS measurement) were as follows: for the interferon beta–treated cohort, 5.1 years (interquartile range [IQR], 3.0-7.0 years); for the contemporary control cohort, 4.0 years (IQR, 2.1-6.4 years); and for the historical control cohort, 10.8 years (IQR, 6.3-14.7 years). The observed outcome rates for reaching a sustained EDSS score of 6 were 10.8%, 5.3%, and 23.1% in the 3 cohorts, respectively. After adjustment for potential baseline confounders (sex, age, disease duration, and EDSS score), exposure to interferon beta was not associated with a statistically significant difference in the hazard of reaching an EDSS score of 6 when either the contemporary control cohort (hazard ratio, 1.30; 95% CI, 0.92-1.83; P = .14) or the historical control cohort (hazard ratio, 0.77; 95% CI, 0.58-1.02; P = .07) were considered. Further adjustment for comorbidities and socioeconomic status, where possible, did not change interpretations, and propensity score adjustment did not substantially change the results.
Conclusion: Among patients with relapsing-remitting MS, administration of interferon beta was not associated with a reduction in progression of disability.
http://jama.jamanetwork.com/article.aspx?articleid=1217239
Original Contribution
July 18, 2012
Association Between Use of Interferon Beta and Progression of Disability in Patients With Relapsing-Remitting Multiple Sclerosis
Afsaneh Shirani, MD; Yinshan Zhao, PhD; Mohammad Ehsanul Karim, MSc; Charity Evans, PhD; Elaine Kingwell, PhD; Mia L. van der Kop, MSc; Joel Oger, MD, FRCPC; Paul Gustafson, PhD; John Petkau, PhD; Helen Tremlett, PhD
Context: Interferon beta is widely prescribed to treat multiple sclerosis (MS); however, its relationship with disability progression has yet to be established.
Objective: To investigate the association between interferon beta exposure and disability progression in patients with relapsing-remitting MS.
Design, Setting, and Patients: Retrospective cohort study based on prospectively collected data (1985-2008) from British Columbia, Canada. Patients with relapsing-remitting MS treated with interferon beta (n = 868) were compared with untreated contemporary (n = 829) and historical (n = 959) cohorts.
Main Outcome Measures: The main outcome measure was time from interferon beta treatment eligibility (baseline) to a confirmed and sustained score of 6 (requiring a cane to walk 100 m; confirmed at >150 days with no measurable improvement) on the Expanded Disability Status Scale (EDSS) (range, 0-10, with higher scores indicating higher disability). A multivariable Cox regression model with interferon beta treatment included as a time-varying covariate was used to assess the hazard of disease progression associated with interferon beta treatment. Analyses also included propensity score adjustment to address confounding by indication.
Results: The median active follow-up times (first to last EDSS measurement) were as follows: for the interferon beta–treated cohort, 5.1 years (interquartile range [IQR], 3.0-7.0 years); for the contemporary control cohort, 4.0 years (IQR, 2.1-6.4 years); and for the historical control cohort, 10.8 years (IQR, 6.3-14.7 years). The observed outcome rates for reaching a sustained EDSS score of 6 were 10.8%, 5.3%, and 23.1% in the 3 cohorts, respectively. After adjustment for potential baseline confounders (sex, age, disease duration, and EDSS score), exposure to interferon beta was not associated with a statistically significant difference in the hazard of reaching an EDSS score of 6 when either the contemporary control cohort (hazard ratio, 1.30; 95% CI, 0.92-1.83; P = .14) or the historical control cohort (hazard ratio, 0.77; 95% CI, 0.58-1.02; P = .07) were considered. Further adjustment for comorbidities and socioeconomic status, where possible, did not change interpretations, and propensity score adjustment did not substantially change the results.
Conclusion: Among patients with relapsing-remitting MS, administration of interferon beta was not associated with a reduction in progression of disability.
Wednesday, June 20, 2012
My Future Self
I like to think about what it would be like to go back in time. Specifically, what I would tell myself 8 years ago to do differently. What if I could go back to the time I was newly diagnosed and say to myself "see what's in store for you?" and go over the laundry list of things I should do and not do and plan for.
I get angry at myself when I go over the laundry list in my mind. Things like "if I had known" and "I should have been smarter" and "if only I had...". I do not get any therapy from this blame game and I always come away feeling hurt. Each time I fall into this destructive pattern of wouldhave/couldhave talk, I conclude with "it's no use living in the past, I just have to move on".
Then I transition to thinking about the future. What is in store for me down the road? My mind takes me down dark alleys of a progressively worsening disease. I can't even bear to put these thoughts into type. I pull myself out, again, with "it's no use worrying about the future, I just have to move on".
Tonight something happened as I found myself mad about the past and stressing about the future. Something grabbed me and said;
"What would your future self tell you to do right now?".
I paused and started choking up as I admitted the following: My future self would tell me to live. Live my life and enjoy the simple things. Enjoy my husband. Enjoy my children. Soak up every moment I spend with them. Watch them smile and laugh and be silly. Stop worrying about the things that cannot be changed. Stop worrying about a future that will be what it will be.
I hope my future self will visit me often. This conversation tonight was good therapy.
I get angry at myself when I go over the laundry list in my mind. Things like "if I had known" and "I should have been smarter" and "if only I had...". I do not get any therapy from this blame game and I always come away feeling hurt. Each time I fall into this destructive pattern of wouldhave/couldhave talk, I conclude with "it's no use living in the past, I just have to move on".
Then I transition to thinking about the future. What is in store for me down the road? My mind takes me down dark alleys of a progressively worsening disease. I can't even bear to put these thoughts into type. I pull myself out, again, with "it's no use worrying about the future, I just have to move on".
Tonight something happened as I found myself mad about the past and stressing about the future. Something grabbed me and said;
"What would your future self tell you to do right now?".
I paused and started choking up as I admitted the following: My future self would tell me to live. Live my life and enjoy the simple things. Enjoy my husband. Enjoy my children. Soak up every moment I spend with them. Watch them smile and laugh and be silly. Stop worrying about the things that cannot be changed. Stop worrying about a future that will be what it will be.
I hope my future self will visit me often. This conversation tonight was good therapy.
Wednesday, May 2, 2012
May Day
A typical day for me is spent caring for a toddler and an infant. I am kept busy with singing songs, coloring pictures, changing diapers, playing with Play-Doh, folding laundry, making snacks, changing diapers, refilling sippy cups, picking up toys, changing diapers, and- well, you get the idea. Any down time I have is spent catching a nap or catching up on email. I don't spend much time thinking about my MS.
But some days are a bit different.
Some days I get truly exasperated trying to do it all with limited energy. Today, the infant snoozed in his swing and the toddler looked at books on my bed while I slept for a half an hour. The wheelchair is a constant reminder that I am an unconventional mom.
This morning, my daughter and I went outside to cut the tulips. I planted them several years ago in a spot that I intended to be my garden. I had crawled around in my Carhartt overalls one fall and dug in the dirt; excited to see the fruits of my labor the following spring. And was it fruitful! The tulips grew into mammoth blooms that first spring. I also planted wildflower seeds and transplanted a couple rose bushes. Gardening was going to be my release.
As my daughter stepped out into the jungle of weeds to snip the flowers, I half-mindedly looked at the dead rose bushes. I saw that only half the tulips had managed to bloom and they were not the glorious flowers they once were. She needed help a few times but had to figure it out on her own with some coaching from mom in the wheelchair on the sidewalk. Soon she was finished and I went inside to get them in water, while she stayed outside and splashed in puddles.
After I trimmed and arranged the flowers, I saw the mail on the kitchen table that my husband had just brought in. The NMSS publication "Momentum" arrived. I picked it up and flipped through the pages. As usual, I found some good tips for living life with MS. And as usual, I scoffed at the ads for the many meds I've tried and have failed me. The patients in the ads look so healthy, so fit, so...vertical. Good for them.
I keep a good attitude most days. I remind myself how incredibly blessed I am, and in how so many ways I am so very, very lucky. Usually I pick myself up from my woe-is-me thoughts with these reminders, and it works. But some days- days like today- I give myself permission to just be down. There is therapy in that, too.
May 2nd, 2012
...and today is a new day! Those tulips greeted me this morning and they are so pretty that I had to smile.
But some days are a bit different.
Some days I get truly exasperated trying to do it all with limited energy. Today, the infant snoozed in his swing and the toddler looked at books on my bed while I slept for a half an hour. The wheelchair is a constant reminder that I am an unconventional mom.
This morning, my daughter and I went outside to cut the tulips. I planted them several years ago in a spot that I intended to be my garden. I had crawled around in my Carhartt overalls one fall and dug in the dirt; excited to see the fruits of my labor the following spring. And was it fruitful! The tulips grew into mammoth blooms that first spring. I also planted wildflower seeds and transplanted a couple rose bushes. Gardening was going to be my release.
As my daughter stepped out into the jungle of weeds to snip the flowers, I half-mindedly looked at the dead rose bushes. I saw that only half the tulips had managed to bloom and they were not the glorious flowers they once were. She needed help a few times but had to figure it out on her own with some coaching from mom in the wheelchair on the sidewalk. Soon she was finished and I went inside to get them in water, while she stayed outside and splashed in puddles.
I keep a good attitude most days. I remind myself how incredibly blessed I am, and in how so many ways I am so very, very lucky. Usually I pick myself up from my woe-is-me thoughts with these reminders, and it works. But some days- days like today- I give myself permission to just be down. There is therapy in that, too.
May 2nd, 2012
...and today is a new day! Those tulips greeted me this morning and they are so pretty that I had to smile.
Tuesday, April 24, 2012
I wish I had been wearing this T-shirt
My family went to Dairy Queen on Sunday for icecream and to meet up with friends for a visit. The disabled parking was full which wasn't the issue. Parked in the closest spot to the door was a big-a**, jacked up, bright red, Dodge Ram with Harley Davidson mudflaps and gardening equipment in the back. No disabled placard and no disabled license plate. The truck was parked funny in the space as it was in the striped "no parking" area.
So we parked in the nearest and biggest space to accomodate my little ol' wheelchair. Shortly after getting in line, who should appear getting into his truck, but a perfectly mobile 60 something year old man. Now I know what your thinking- disability isn't always obvious. Or, perhaps he parked there for his passenger. My husband went out there to talk to the guy with our infant son still strapped in his car seat. I'm watching intently, all the while aware that a 60 something year old woman keeps eyeing me. This I am used to as I sort of draw attention to myself; a slim young woman in a wheelchair.
The man is saying something to my husband as he walks past him back into the restaurant to retrieve (you guessed it) his perfectly mobile wife. First he told my husband that it was none of his business. It's a good thing he had our son with him; it's what kept the "discussion" from turning sour at that point. After my husband pointed out that we could not park in that spot, the man's next response was that he had the placard in his pocket and just forgot to put it up. At this point the woman is corroborating with this story and they are getting in the truck to leave.
So we parked in the nearest and biggest space to accomodate my little ol' wheelchair. Shortly after getting in line, who should appear getting into his truck, but a perfectly mobile 60 something year old man. Now I know what your thinking- disability isn't always obvious. Or, perhaps he parked there for his passenger. My husband went out there to talk to the guy with our infant son still strapped in his car seat. I'm watching intently, all the while aware that a 60 something year old woman keeps eyeing me. This I am used to as I sort of draw attention to myself; a slim young woman in a wheelchair.
The man is saying something to my husband as he walks past him back into the restaurant to retrieve (you guessed it) his perfectly mobile wife. First he told my husband that it was none of his business. It's a good thing he had our son with him; it's what kept the "discussion" from turning sour at that point. After my husband pointed out that we could not park in that spot, the man's next response was that he had the placard in his pocket and just forgot to put it up. At this point the woman is corroborating with this story and they are getting in the truck to leave.
Monday, April 16, 2012
Pregnancy and Intrathecal Baclofen Therapy in the Literature
I'm a nurse, so I needed "official" publications from the medical world to satisfy my search for information in making an informed decision. This is a list of the literature I found using PubMed. If you do not have access, ask your provider to supply you with these articles.
(1992) Pregnancy in a quadraplegic patient treated with continuous intrathecal baclofen infusion to manage her severe spasticity
(1997) Labour pain management in a parturient with an implanted intrathecal pump
(2000) Pregnancy outcome in a woman exposed to continuous intrathecal baclofen infusion
(2001) Intrathecal baclofen for severe tetanus in a pregnant woman
(2003) Intrathecal baclofen pump implantation during pregnancy
(2008) The safety of baclofen in pregnancy- intrathecal therapy in multiple sclerosis
(2009) Epidural analgesia in labor for a woman with an intrathecal baclofen pump
(2009) Intrathecal Baclofen Administration During Pregnancy- A Case Series and Focused Clinical Review
(2009) Intrathecal baclofen and pregnancy- Implications for clinical care
(2010) Intrathecal baclofen pump – a viable therapeutic option in pregnancy
(1992) Pregnancy in a quadraplegic patient treated with continuous intrathecal baclofen infusion to manage her severe spasticity
(1997) Labour pain management in a parturient with an implanted intrathecal pump
(2000) Pregnancy outcome in a woman exposed to continuous intrathecal baclofen infusion
(2001) Intrathecal baclofen for severe tetanus in a pregnant woman
(2003) Intrathecal baclofen pump implantation during pregnancy
(2008) The safety of baclofen in pregnancy- intrathecal therapy in multiple sclerosis
(2009) Epidural analgesia in labor for a woman with an intrathecal baclofen pump
(2009) Intrathecal Baclofen Administration During Pregnancy- A Case Series and Focused Clinical Review
(2009) Intrathecal baclofen and pregnancy- Implications for clinical care
(2010) Intrathecal baclofen pump – a viable therapeutic option in pregnancy
Friday, April 13, 2012
Wait for it...
No excuses. I should not have neglected to post to this blog for an entire year. It was never far from my mind; well not for long that is. Part of me was reluctant to share what was going on for awhile. And then when I finally planned to post an update, it just didn't feel right. Here I am now, hoping to redeem myself with those of you who have all but given up on me!
It has been quite the year. After careful consideration and a lot of prayer, my husband and I decided to become pregnant again. This was not a decision that was easily made. Primarily, we had great concern with regards to the baclofen pump, catheter, and to the well being of the baby. Then of course came the next challenge; how to care for the baby once the pregnancy was over. I spent weeks on the computer searching for information and trying to cover every angle I could think of. When I couldn't come up with any major red flags, we decided to go for it. After a textbook normal 40 week pregnancy, our healthy son was born after a rapid labor and delivery, and we all came home from the hospital the next day. PHEW!
It has been quite the year. After careful consideration and a lot of prayer, my husband and I decided to become pregnant again. This was not a decision that was easily made. Primarily, we had great concern with regards to the baclofen pump, catheter, and to the well being of the baby. Then of course came the next challenge; how to care for the baby once the pregnancy was over. I spent weeks on the computer searching for information and trying to cover every angle I could think of. When I couldn't come up with any major red flags, we decided to go for it. After a textbook normal 40 week pregnancy, our healthy son was born after a rapid labor and delivery, and we all came home from the hospital the next day. PHEW!
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