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!
Thursday, April 21, 2011
April 21st
And now it has been one year since I had the baclofen pump placed! This last year has been unbelievable in so many ways. I have learned a lot about myself and my perspective has changed. I am so grateful for things that I used to take for granted. I see something beautiful and I thank God for the ability to see it. I hear my child giggling and I thank God for the ability to hear her. I can apply this to everything in my life because I know what it is like to lose a seemingly simple ability- the ability to walk.
My days are spent without a schedule outside my home. I am amazed that in spite of that, time continues to speed by! Friday comes around and I think, "already?!". I've got projects that keep me busy and frustrated, which I am grateful for. Yes, even the busy work is a blessing! All in all, I am doing okay. Life is good.
My days are spent without a schedule outside my home. I am amazed that in spite of that, time continues to speed by! Friday comes around and I think, "already?!". I've got projects that keep me busy and frustrated, which I am grateful for. Yes, even the busy work is a blessing! All in all, I am doing okay. Life is good.
Tuesday, April 19, 2011
April 19th
I wonder if I will ever get through the entire day on April 19th without remembering that it's my anniversary of receiving the diagnosis of MS. It was 6:30 in the evening when I realized the significance of this day. I had a nagging feeling all day that there was something about the 19th...
After a brief moment of reflection about that aweful day, I ended it with a "hmpf". I think this is how the last couple years have gone. No more tears over it. I certainly don't celebrate it. Tonight I made a meatloaf.
After a brief moment of reflection about that aweful day, I ended it with a "hmpf". I think this is how the last couple years have gone. No more tears over it. I certainly don't celebrate it. Tonight I made a meatloaf.
Monday, March 14, 2011
Wheelchair Hikers
"Figure out what you want to do and then worry about the details later. The details can always be worked out one way or another."
This statement hit me because it is the complete opposite of how I have to go about my day. For me, I wake up with X amount of energy and I have to choose my activities with that amount in mind. I can do two or three activities that use less energy like wash and dry a load of laundry. Or I can do one activity that uses all my energy like get in the car and visit someone.
But the statement speaks to me. It says- stay in faith, set your goal and go. Don't worry that you can't see the path, it will pave itself along the way.
Monday, February 21, 2011
Dreams
It has been a long time since my last post I know. I have written a couple and they're sitting on the dashboard in draft mode. That means I typed them but then didn't publish. I read them and think "too whiney". So they sit.
What's new? Nothing really. My little girl is 2 1/2 and pretty much the center of my universe. Her personality comes through a little more each day and she is quite the delightful mix of stubborn, silly, hysterical, loving, and tyrannical. She keeps me on my proverbial toes. Her mind is a sponge and it is just too cool to watch her develop intellectually. I've got a smart cookie on my hands!
Emotionally I have come a long way. Not being able to return to work was a punch to the gut that continues to ache. With time it's getting better. The idea of it is feeling more normal. When I am asked any questions about my employment, rather than struggle with how to answer, I now say that I'm a stay-at-home mom. Seems simple enough, just entirely disingenuous as that was more an outcome than an objective. But it works. It sure tastes sweeter coming out of my mouth than "I'm disabled and had to leave my job". It's all about perspective.
But I have the dreams. Each one is slightly different but the theme is the same. It's my first shift back to work after being gone for a long time. I know a lot of the nurses there but there are a lot of new nurses who don't give me second notice. The older ones seem happy to see me and I know I'm being watched behind my back. I'm moving well. I walk quickly, effortlessly, gracefully. I'm standing and not needing to sit down all the time. I'm thinking to myself, "this is great!" and "I shouldn't be able to do this!". I am a bit disorganized and out of rhythm but I'm okay with that because I've been gone for so long. "I'll be back up to speed in no time" I tell my self confidently. I reach the end of my shift and I am tired but feeling good. A little overwhelmed but glad to be back. Ready to go home and refuel but eager to return the next day.
I was reflecting on these dreams the other day and of course I got emotional. It's not fair. Well duh. I angrily wished I wasn't having the dreams because in the light of "moving on" it seems like cruel irony. But I retracted the wish right away. How would I feel if I stopped having the dreams? Or worse, if in my dreams I'm in the wheelchair. So far, in all my dreams I am mobile. I am able to do things in my dreams that in reality are impossible for me. My dreams are a chance to feel normal and to feel free from my body. Therein lies the power of our minds.
I'm working on finding my place again. Being a stay-at-home mom is awesome! I continue to find little clues along the way that God's got this one. He's not going to leave me dangling; feeling like the rugs been pulled out from under me for good. It's all covered in the Master's plan, I just need to keep the faith and my eyes open.
What's new? Nothing really. My little girl is 2 1/2 and pretty much the center of my universe. Her personality comes through a little more each day and she is quite the delightful mix of stubborn, silly, hysterical, loving, and tyrannical. She keeps me on my proverbial toes. Her mind is a sponge and it is just too cool to watch her develop intellectually. I've got a smart cookie on my hands!
Emotionally I have come a long way. Not being able to return to work was a punch to the gut that continues to ache. With time it's getting better. The idea of it is feeling more normal. When I am asked any questions about my employment, rather than struggle with how to answer, I now say that I'm a stay-at-home mom. Seems simple enough, just entirely disingenuous as that was more an outcome than an objective. But it works. It sure tastes sweeter coming out of my mouth than "I'm disabled and had to leave my job". It's all about perspective.
But I have the dreams. Each one is slightly different but the theme is the same. It's my first shift back to work after being gone for a long time. I know a lot of the nurses there but there are a lot of new nurses who don't give me second notice. The older ones seem happy to see me and I know I'm being watched behind my back. I'm moving well. I walk quickly, effortlessly, gracefully. I'm standing and not needing to sit down all the time. I'm thinking to myself, "this is great!" and "I shouldn't be able to do this!". I am a bit disorganized and out of rhythm but I'm okay with that because I've been gone for so long. "I'll be back up to speed in no time" I tell my self confidently. I reach the end of my shift and I am tired but feeling good. A little overwhelmed but glad to be back. Ready to go home and refuel but eager to return the next day.
I was reflecting on these dreams the other day and of course I got emotional. It's not fair. Well duh. I angrily wished I wasn't having the dreams because in the light of "moving on" it seems like cruel irony. But I retracted the wish right away. How would I feel if I stopped having the dreams? Or worse, if in my dreams I'm in the wheelchair. So far, in all my dreams I am mobile. I am able to do things in my dreams that in reality are impossible for me. My dreams are a chance to feel normal and to feel free from my body. Therein lies the power of our minds.
I'm working on finding my place again. Being a stay-at-home mom is awesome! I continue to find little clues along the way that God's got this one. He's not going to leave me dangling; feeling like the rugs been pulled out from under me for good. It's all covered in the Master's plan, I just need to keep the faith and my eyes open.
Saturday, December 11, 2010
Silver Linings
It helps to look for them in situations that are less than desirable. Sometimes they aren't easy to see, and other times they just seem to fall in your lap. I can't think of a time when a silver lining was more apparent then one I'm about to share with you.
The reality of not being able to return to work was and continues to be harsh. I loved my job. Providing nursing care to hospitalized infants was my calling and why I pursued my RN license as a very young woman. I saw myself retiring with 40+ years of service as a NICU nurse. I can think of no other way I would have rather spent a career.
Here's the silver lining. If by some miracle I would have been able to return at the end of my medical leave of absence, I would have been back for two weeks before news came out that my position would be eliminated at the end of the year. If I had been able, I would have had to bid for a position with more hours and possibly on a different shift. Since I likely wouldn't have been able to work more days (this is the miracle scenario, ya know) I would have had to "resign" any way. Bah humbug!
Ok, so how is THAT a silver lining? I had to think hard about this before it revealed itself to me...
The utter anguish felt among my coworkers is indescribable. With the exception of but a few, lives have been turned upside down as hours and shifts have been dramatically changed. Most lost their jobs and have had to take different positions. Some had their position completely eliminated and some were not offered a position at all.
So, I was spared from the pain. Instead of killing myself to get back to work to have my job cut after just a couple months, I've had a little bit of a head start getting used to the reality of not being able to work.
Life is funny that way with all the twists and turns, sharp corners and dead-ends. God has a way of working things out. I have faith that He has a reason for my life and the way things are going for me with this damn disease. I'm a nurse at heart even if I'm not on the floor right now. I pray that He continue to reveal the silver lining of every storm cloud that dumps on me.
The reality of not being able to return to work was and continues to be harsh. I loved my job. Providing nursing care to hospitalized infants was my calling and why I pursued my RN license as a very young woman. I saw myself retiring with 40+ years of service as a NICU nurse. I can think of no other way I would have rather spent a career.
Here's the silver lining. If by some miracle I would have been able to return at the end of my medical leave of absence, I would have been back for two weeks before news came out that my position would be eliminated at the end of the year. If I had been able, I would have had to bid for a position with more hours and possibly on a different shift. Since I likely wouldn't have been able to work more days (this is the miracle scenario, ya know) I would have had to "resign" any way. Bah humbug!
Ok, so how is THAT a silver lining? I had to think hard about this before it revealed itself to me...
The utter anguish felt among my coworkers is indescribable. With the exception of but a few, lives have been turned upside down as hours and shifts have been dramatically changed. Most lost their jobs and have had to take different positions. Some had their position completely eliminated and some were not offered a position at all.
So, I was spared from the pain. Instead of killing myself to get back to work to have my job cut after just a couple months, I've had a little bit of a head start getting used to the reality of not being able to work.
Life is funny that way with all the twists and turns, sharp corners and dead-ends. God has a way of working things out. I have faith that He has a reason for my life and the way things are going for me with this damn disease. I'm a nurse at heart even if I'm not on the floor right now. I pray that He continue to reveal the silver lining of every storm cloud that dumps on me.
Thursday, October 14, 2010
A Snail's Pace
The day I've been dreading came last week as I have had to resign from my position at work. My official last day is the last day of my medical leave on the 23rd. I’ve cried my eyes out too many times to count and it still hurts a lot. It’s hard to say goodbye to 11 years of working my dream job, *my calling*, and not have a choice about it.
It’s getting a little better though. I’m moving on emotionally at a snail’s pace, transitioning from “what was” to “what is”. It’s one of those things. You can either wallow in self pity and make everyone around you suffer, or you can pick up, suck it up, and put a smile on your face and make the best of it. It’s a lousy place to be in and I pray that time will heal my heart and I can find new joy and new meaning in new things. My frame of mind is moving me toward being joyous that I get to raise my daughter and be with her all the time. I have lots of ideas planned for us to do when the time is right and I’m excited about it.
If you think about it, say a prayer for me. That God will help me to see His plan and the big picture. That He’ll help me to be at peace with something that right now, just feels pretty rotten.
It’s getting a little better though. I’m moving on emotionally at a snail’s pace, transitioning from “what was” to “what is”. It’s one of those things. You can either wallow in self pity and make everyone around you suffer, or you can pick up, suck it up, and put a smile on your face and make the best of it. It’s a lousy place to be in and I pray that time will heal my heart and I can find new joy and new meaning in new things. My frame of mind is moving me toward being joyous that I get to raise my daughter and be with her all the time. I have lots of ideas planned for us to do when the time is right and I’m excited about it.
If you think about it, say a prayer for me. That God will help me to see His plan and the big picture. That He’ll help me to be at peace with something that right now, just feels pretty rotten.
Wednesday, July 28, 2010
Nag nag nag...
I know it's been a while since my last post. To be honest, I haven't felt particularly inspired to share.
Let's see, last week I had another birthday. I appreciate all the greetings I received! I had to laugh at myself because I use to think my birthday was such an exciting cause for celebration (it's all about me). But this year was different. I almost forgot about it within just a few days of the date. Funny how perspective changes with each passing year.
One week ago, I started a new medication (released in March of this year) called Ampyra. This is a breakthrough medication as it is the first to treat a symptom of MS. Studies showed an improvement in walking speed for about half of individuals taking it. I've tried so many meds where I either had no effect or things blew up in my face, that I have reserved exuberance for the sake of preserving my sanity. So far, no side effects. Strangely enough, I may be experiencing a slight decrease in spasticity which is not a listed benefit of the drug.
Fingers crossed, another breakthrough medication will be approved by the FDA in September which my neurologist is very excited about prescribing for me. It is called fingolimod and will be the first in a class of oral disease-modifying drugs i.e. not an injection! What happened to my hopes of receiving Rituxin? Well, I'll take what I can get, and the availability of Rituxin is further off in the distance.
The Lord gives me enough grace to make it from morning til bedtime, and the next day He gives me a fresh dose of grace. So I just keep on truckin'- taking one day at a time.
Let's see, last week I had another birthday. I appreciate all the greetings I received! I had to laugh at myself because I use to think my birthday was such an exciting cause for celebration (it's all about me). But this year was different. I almost forgot about it within just a few days of the date. Funny how perspective changes with each passing year.
One week ago, I started a new medication (released in March of this year) called Ampyra. This is a breakthrough medication as it is the first to treat a symptom of MS. Studies showed an improvement in walking speed for about half of individuals taking it. I've tried so many meds where I either had no effect or things blew up in my face, that I have reserved exuberance for the sake of preserving my sanity. So far, no side effects. Strangely enough, I may be experiencing a slight decrease in spasticity which is not a listed benefit of the drug.
Fingers crossed, another breakthrough medication will be approved by the FDA in September which my neurologist is very excited about prescribing for me. It is called fingolimod and will be the first in a class of oral disease-modifying drugs i.e. not an injection! What happened to my hopes of receiving Rituxin? Well, I'll take what I can get, and the availability of Rituxin is further off in the distance.
The Lord gives me enough grace to make it from morning til bedtime, and the next day He gives me a fresh dose of grace. So I just keep on truckin'- taking one day at a time.
Thursday, June 24, 2010
A good day
I completed my third daily IV steroid infusion this morning at the clinic which moved to Allenmore Hospital in April. I am happy about the move as it is much more convenient and pleasant for the patient. I'm feeling much stronger today, able to take several steps without my walker. Steroid "edginess" is at minimal level. The glow in my face is a nice change from the pale and tired look. I'll feel better when the temperature tones down just a touch as heat+MS+steroids does not a happy camper make out of me.
After the infusion, I had an appointment at Good Sam's pump clinic to have my pump dose adjusted. Until now, we've been conservative on the amount of increases. MS is more sensitive to changes than say stroke or brain injury individuals, so it makes for a little scarier situation when making adjustments. Too much dose- no tone, no mobility, return visit to decrease the dose. Too small an adjustment- a wasted one hour trip and back and added time to schedule a repeat visit. So I stated my case and it was agreed to make a larger adjustment in the dose. So far so good! Hopefully tomorrow this present hoorah will remain.
In addition to my three daily infusions every three months, I have been taking Methotrexate (weekly) for a month. It's a low-dose cancer drug also used for rheumatoid arthritis. So far so good. I haven't noticed changes other than mild nausea but I need to give it more time. Another possible addition is a drug called Ampyra. It is new for MS patients and is shown to improve mobility for approximately 40% of people taking it. I am awaiting insurance approval (it is horridly expensive) then will begin. If after 4 to 6 weeks there are no discernible changes, I stop taking it. No biggie. And then there's the promise drug Rituxin. My Neurologist has been working with a gentleman at Stanford to have this medication donated to me on a humanitarian basis (another big price tag and insurance denied it). He is excited to help me, but the whole FDA approval for off-label use for MS is slowing things down. If I must, I wait til it goes on the market for MS which is in about a year.
I have learned so much the last 3-4 months and my eyes are opened! These days I am not sure in which direction I should pray. So my fall back prayer is all-inclusive and huge...CURE ME! I can pray for that against all odds because God is greater than all things.
Thanks for reading...whoever you are. The day in the life of a mommy with mobility issues and a daughter that is beautifully oblivious to it all makes for interesting and fun days. I taught her the hand sign for "I Love You" and she eagerly reproduces an "L" sign. Normally this would turn it into a negative connotation but I choose to have it mean "love" and we will work on the rest later :)
After the infusion, I had an appointment at Good Sam's pump clinic to have my pump dose adjusted. Until now, we've been conservative on the amount of increases. MS is more sensitive to changes than say stroke or brain injury individuals, so it makes for a little scarier situation when making adjustments. Too much dose- no tone, no mobility, return visit to decrease the dose. Too small an adjustment- a wasted one hour trip and back and added time to schedule a repeat visit. So I stated my case and it was agreed to make a larger adjustment in the dose. So far so good! Hopefully tomorrow this present hoorah will remain.
In addition to my three daily infusions every three months, I have been taking Methotrexate (weekly) for a month. It's a low-dose cancer drug also used for rheumatoid arthritis. So far so good. I haven't noticed changes other than mild nausea but I need to give it more time. Another possible addition is a drug called Ampyra. It is new for MS patients and is shown to improve mobility for approximately 40% of people taking it. I am awaiting insurance approval (it is horridly expensive) then will begin. If after 4 to 6 weeks there are no discernible changes, I stop taking it. No biggie. And then there's the promise drug Rituxin. My Neurologist has been working with a gentleman at Stanford to have this medication donated to me on a humanitarian basis (another big price tag and insurance denied it). He is excited to help me, but the whole FDA approval for off-label use for MS is slowing things down. If I must, I wait til it goes on the market for MS which is in about a year.
I have learned so much the last 3-4 months and my eyes are opened! These days I am not sure in which direction I should pray. So my fall back prayer is all-inclusive and huge...CURE ME! I can pray for that against all odds because God is greater than all things.
Thanks for reading...whoever you are. The day in the life of a mommy with mobility issues and a daughter that is beautifully oblivious to it all makes for interesting and fun days. I taught her the hand sign for "I Love You" and she eagerly reproduces an "L" sign. Normally this would turn it into a negative connotation but I choose to have it mean "love" and we will work on the rest later :)
Wednesday, June 2, 2010
A huge milestone
I am 6 weeks post-op! This is an exciting time for two reasons: I am infection-free, and I can resume lifting more than 10 pounds (i.e. my little girl)!
I have SO much to be thankful for.
First, that recovery has gone as well as it has. No infection, no major complications, and improvement in my mobility. Immediately post-op, I was 100% wheelchair dependant. Now, I am 98% walker dependant, 2% unassisted. I haven't needed to use my wheelchair for several days now. I have a new ankle brace to help me walk which is taking a lot of getting used to, but I am optimistic that with it I can gain confidence in my steps.
Second, that I am able to parent my child on my own. I am immensely grateful to all the wonderful people who came to my house to care for her and help me during my recovery. 6 weeks is a long time, and it boggles my mind that it all came together the way it did! I am thrilled to be "on my own" in caring for her, though, she is more obstinate now than she was before surgery. Yikes!
Third, that I have so many people praying for me and thinking positive thoughts! It is difficult for me to remain as positive as my onlookers, until I look back and assess how far I have come.
Now if only I didn't have to struggle through the physical therapy exercises...
I have SO much to be thankful for.
First, that recovery has gone as well as it has. No infection, no major complications, and improvement in my mobility. Immediately post-op, I was 100% wheelchair dependant. Now, I am 98% walker dependant, 2% unassisted. I haven't needed to use my wheelchair for several days now. I have a new ankle brace to help me walk which is taking a lot of getting used to, but I am optimistic that with it I can gain confidence in my steps.
Second, that I am able to parent my child on my own. I am immensely grateful to all the wonderful people who came to my house to care for her and help me during my recovery. 6 weeks is a long time, and it boggles my mind that it all came together the way it did! I am thrilled to be "on my own" in caring for her, though, she is more obstinate now than she was before surgery. Yikes!
Third, that I have so many people praying for me and thinking positive thoughts! It is difficult for me to remain as positive as my onlookers, until I look back and assess how far I have come.
Now if only I didn't have to struggle through the physical therapy exercises...
Friday, May 21, 2010
Three Clicks of the Heel...
...and I am still in the land of Oz. Well, I shouldn't sound so negative, because thinking back on the last month, I have to admit that things are a lot better.
The first couple weeks home from the hospital were spent healing. First, my appetite returned as I backed off of the pain medication. Then, I started sleeping better at night. Slowly but surely, my body systems returned to a more normal state. Surgery and anesthesia really throw things for a loop!
I started home health physical therapy about three weeks ago. I am told by people who see me about once a week that I am moving around better. At first I didn't really believe it, but it's a consistent theme I am hearing, so it must be true. The exercises are hard to do, mentally and physically. The hardest part about it is that I can't count on one day to the next, or one hour to the next, being strong enough to do them. Consistency is important to doing them and getting stronger, so I feel discouraged when I go an entire day without exercising. I call it "falling off the wagon".
The incisions are mostly healed. The pump is okay. "We" have not bonded yet. It is large and I am reminded of it's presence every time I move. It still hurts frequently when I bend or twist just right as I have become more active. I'm told that is normal as to the location of it. Normally it would have been placed just under the skin, but on smaller framed people, it is placed under the facia for a less pronounced appearance. That is the reason it is more tender at this point.
Less pronounced appearance. Hmmpff. I look pregnant on one side of my body. The pump displaces my belly button slightly. Not that my bikini days weren't already long over, this definitely seals the deal. Like I said, "we" have not bonded, but here's the thing...
I am no longer exposing my body to that massive dose of oral Baclofen. I am not a zombie during the day and an insomniac at night. I am no longer tied to the clock. When I start begrudging the pump, I remind myself that I had no choice. It was the right move and I thank God that He made it happen so fast.
With PT and strength training, I am on my way. The pace is painfully slow. But to be fair to myself, it's two steps forward and only one step back at this point. Oh, and that window of 4 to 6 weeks of the risk of infection is narrowing. Thank God! I covet your prayers: to remain infection-free, to continue getting stronger, and to be able to walk independently soon.
The first couple weeks home from the hospital were spent healing. First, my appetite returned as I backed off of the pain medication. Then, I started sleeping better at night. Slowly but surely, my body systems returned to a more normal state. Surgery and anesthesia really throw things for a loop!
I started home health physical therapy about three weeks ago. I am told by people who see me about once a week that I am moving around better. At first I didn't really believe it, but it's a consistent theme I am hearing, so it must be true. The exercises are hard to do, mentally and physically. The hardest part about it is that I can't count on one day to the next, or one hour to the next, being strong enough to do them. Consistency is important to doing them and getting stronger, so I feel discouraged when I go an entire day without exercising. I call it "falling off the wagon".
The incisions are mostly healed. The pump is okay. "We" have not bonded yet. It is large and I am reminded of it's presence every time I move. It still hurts frequently when I bend or twist just right as I have become more active. I'm told that is normal as to the location of it. Normally it would have been placed just under the skin, but on smaller framed people, it is placed under the facia for a less pronounced appearance. That is the reason it is more tender at this point.
Less pronounced appearance. Hmmpff. I look pregnant on one side of my body. The pump displaces my belly button slightly. Not that my bikini days weren't already long over, this definitely seals the deal. Like I said, "we" have not bonded, but here's the thing...
I am no longer exposing my body to that massive dose of oral Baclofen. I am not a zombie during the day and an insomniac at night. I am no longer tied to the clock. When I start begrudging the pump, I remind myself that I had no choice. It was the right move and I thank God that He made it happen so fast.
With PT and strength training, I am on my way. The pace is painfully slow. But to be fair to myself, it's two steps forward and only one step back at this point. Oh, and that window of 4 to 6 weeks of the risk of infection is narrowing. Thank God! I covet your prayers: to remain infection-free, to continue getting stronger, and to be able to walk independently soon.
Sunday, May 2, 2010
Trip to the ED
When I left the hospital Tuesday afternoon, my physician and the pump clinic RN were concerned about the incision on my back as it seemed to not be entirely closed and was draining a little. They put a new dressing on it and told me call the surgeon's office if it continued to act up.
Wednesday, my mom checked it and there was a tiny little bit but mostly dry. The wound is pink with no outward signs of infection. But Thursday night my husband checked it and there was quite a bit more drainage. The site still looks okay, but of course I'm worried about an infection.
After a few calls to the nurse at the surgeon's office first thing Friday morning, she instructs me to go to the emergency department at Tacoma General. My dear sister dropped everything and took me in as my dear neighbor stood watchful eye over Kate so my husband could still go to work.
I was expecting the worst...labs, scans, readmission, antibiotics, surgery...
The ED physician assessed the wound and drainage, took a culture, and determined that the drainage was the result of a small seroma, or pocket of fluid that had worked it's way loose as I've become more active with bending and twisting. He redressed the wound and said it just needs to heal from the inside out.
Relieved, I was discharged and home by 3:30 in the afternoon. The drainage is continuing, but the site is pink without signs of infection. I see my rehab physician on Tuesday and surgeon on Wednesday. Please continue to pray that I remain infection free!
Wednesday, my mom checked it and there was a tiny little bit but mostly dry. The wound is pink with no outward signs of infection. But Thursday night my husband checked it and there was quite a bit more drainage. The site still looks okay, but of course I'm worried about an infection.
After a few calls to the nurse at the surgeon's office first thing Friday morning, she instructs me to go to the emergency department at Tacoma General. My dear sister dropped everything and took me in as my dear neighbor stood watchful eye over Kate so my husband could still go to work.
I was expecting the worst...labs, scans, readmission, antibiotics, surgery...
The ED physician assessed the wound and drainage, took a culture, and determined that the drainage was the result of a small seroma, or pocket of fluid that had worked it's way loose as I've become more active with bending and twisting. He redressed the wound and said it just needs to heal from the inside out.
Relieved, I was discharged and home by 3:30 in the afternoon. The drainage is continuing, but the site is pink without signs of infection. I see my rehab physician on Tuesday and surgeon on Wednesday. Please continue to pray that I remain infection free!
Wednesday, April 28, 2010
First Full Day Home
I cannot begin to thank the countless people who have stepped up and offered a lending hand. From the bottom of my heart...I hope you know I am ever so grateful.
One week ago on the 21st, I had a two hour surgical procedure at Tacoma General Hospital for the placement of an Intrathecal Baclofen medication pump. The pump rests in the lower right quadrant of my abdomen, a catheter is tunneled under my skin to my back, it is inserted through and sutured in the lumbar region of the spine, and then threaded up so that the tip rests at T-9.
The first night at TG I battled a repeat (only worse) of what I experienced following the test dose. Massively low blood levels of baclofen in my body caused my teeth to chatter and legs to twist into stiff, contorted positions. I begged the nurse to call my doctor and give me some oral baclofen. About 40 minutes after the dose, I got sick from pain medicine. I wasn't intending on needing anyone to stay with me, but my Mom stayed even though she had clinicals early in the morning. When I would start into the chattering and start moaning, she'd get up and flex my feet and massage the spasms out of my legs. As my breathing slowed, she'd fix the covers and curl up with her pillow and blanket in the corner. I felt so bad that she stayed all night, but I don't know how I would have gotten through. I love you, Mom.
The next day I was discharged from Tacoma General and admitted to Good Samaritan Hospital's Rehabilitation unit where I immediately started OT (occupational therapy) and PT (physical therapy). Immediately, the dose on the pump was adjusted up and would be two more times (daily) after that. I stayed there a total of five days.
Higher than expected levels of internal and incisional pain made it difficult to keep my head in the game, and nausea from the pain meds made it almost impossible to want to eat anything.
I was discharged home on the 27th. The pain is easing but my strength is yet to return. I will be receiving physical therapy via home health starting tomorrow.
Please pray that my body stave off infection during the next critical 5 weeks and that with good nutrition and rest, my strength will return.
One week ago on the 21st, I had a two hour surgical procedure at Tacoma General Hospital for the placement of an Intrathecal Baclofen medication pump. The pump rests in the lower right quadrant of my abdomen, a catheter is tunneled under my skin to my back, it is inserted through and sutured in the lumbar region of the spine, and then threaded up so that the tip rests at T-9.
The first night at TG I battled a repeat (only worse) of what I experienced following the test dose. Massively low blood levels of baclofen in my body caused my teeth to chatter and legs to twist into stiff, contorted positions. I begged the nurse to call my doctor and give me some oral baclofen. About 40 minutes after the dose, I got sick from pain medicine. I wasn't intending on needing anyone to stay with me, but my Mom stayed even though she had clinicals early in the morning. When I would start into the chattering and start moaning, she'd get up and flex my feet and massage the spasms out of my legs. As my breathing slowed, she'd fix the covers and curl up with her pillow and blanket in the corner. I felt so bad that she stayed all night, but I don't know how I would have gotten through. I love you, Mom.
The next day I was discharged from Tacoma General and admitted to Good Samaritan Hospital's Rehabilitation unit where I immediately started OT (occupational therapy) and PT (physical therapy). Immediately, the dose on the pump was adjusted up and would be two more times (daily) after that. I stayed there a total of five days.
Higher than expected levels of internal and incisional pain made it difficult to keep my head in the game, and nausea from the pain meds made it almost impossible to want to eat anything.
I was discharged home on the 27th. The pain is easing but my strength is yet to return. I will be receiving physical therapy via home health starting tomorrow.
Please pray that my body stave off infection during the next critical 5 weeks and that with good nutrition and rest, my strength will return.
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