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Vibrant and motivated, Joni isn't going to let relapsing MS get in the way of her goals. Follow her story as she balances her life with her relapsing MS.
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This journal reflects the personal experience of one person and others can be different. It is best to contact your physician to discus what's best for you. Joni is an MS LifeLines Ambassador and has chosen to share her story with others living with MS. MS LifeLines and MS LifeLines Ambassadors are sponsored by EMD Serono and Pfizer.
Tuesday, February 9, 2010
How I Celebrate My Successes
Having relapsing MS isn't only something that I have to live with, but also something that my family and friends have to live with. I have an amazing group of people to help support me during tough times, and it's only fair that they also help me celebrate my successes.
It doesn't matter how large (positive results from my latest MRI) or small (completing a project) of a success I have, I like to celebrate it. For me a celebration can be a small dinner party or a weekend away. The most important part of a celebration for me is the people I choose to celebrate with.
Sometimes it may be a personal success that I want to celebrate on my own. In this case, I will often do something that I enjoy such as treating myself to a pedicure or just relaxing outside and reading a book.
For the most part, every day that I can continue to live the way that I want, I consider being a success. I celebrate these days by looking forward to the next one.
It doesn't matter how large (positive results from my latest MRI) or small (completing a project) of a success I have, I like to celebrate it. For me a celebration can be a small dinner party or a weekend away. The most important part of a celebration for me is the people I choose to celebrate with.
Sometimes it may be a personal success that I want to celebrate on my own. In this case, I will often do something that I enjoy such as treating myself to a pedicure or just relaxing outside and reading a book.
For the most part, every day that I can continue to live the way that I want, I consider being a success. I celebrate these days by looking forward to the next one.
Posted by: Joni, Tuesday, February 9, 2010
Tuesday, January 26, 2010
If I Only Knew Then What I Know Now: What I've Learned About MS Since Being Diagnosed
The most important thing that I've learned since being diagnosed with multiple sclerosis is that my life didn't end when the doctor said, "You have relapsing MS." After diagnosis, I went through the stages of grief, denial, anger, bargaining and acceptance. But after acceptance, I still thought that life as I knew it was over.
Of course, I've had to make some modifications in my life as a result of my diagnosis, but it's far from over. For a couple of years after diagnosis, I scaled back the amount of activities I took part in. Most of this was due to the fear of not being able to complete what I started. However, as time progressed, I realized that I could do more than what I was limiting myself to.
Now, I'm as active as I was before diagnosis, just in a different way. I know my limits and listen to my body to make sure I don't over do it. Had I known how to adjust my activities and not just quit them, I would have been able to do so much more for those first couple of years after I was diagnosed. The good news is that now I know, and I can tell all of you not to make the same mistakes I did.
Check back on February 9th for Joni's next journal entry.
Of course, I've had to make some modifications in my life as a result of my diagnosis, but it's far from over. For a couple of years after diagnosis, I scaled back the amount of activities I took part in. Most of this was due to the fear of not being able to complete what I started. However, as time progressed, I realized that I could do more than what I was limiting myself to.
Now, I'm as active as I was before diagnosis, just in a different way. I know my limits and listen to my body to make sure I don't over do it. Had I known how to adjust my activities and not just quit them, I would have been able to do so much more for those first couple of years after I was diagnosed. The good news is that now I know, and I can tell all of you not to make the same mistakes I did.
Check back on February 9th for Joni's next journal entry.
Posted by: Joni, Tuesday, January 26, 2010
Tuesday, January 12, 2010
In It for the Long Haul: Practical Tips for Sticking with Your Treatment
I live alone, so it would be very easy for me not to take my relapsing MS medication. No one would know besides me and eventually maybe my doctor. However, with my friends’ and family’s involvement, it would be impossible for me to get away with that even if I wanted to.
I take my Rebif shots on Sunday, Tuesday, and Thursday. It amazes me how involved my friends are with my medication management. For instance, a few Sundays ago I had some people over for a cook out. As the evening dwindled down, one of my friends asked, “Hey, isn’t it shot night?”
On top of having others involved with my medication management, I am also very active in managing it. What helps me to be compliant is building routines. Every Sunday, a group of my friends gets together for dinner and to watch our favorite TV show. I use this weekly gathering as a reminder to restart my shots for the week. I have Pilates class on Tuesdays and Thursdays and also use these classes as a reminder to take my shots that evening.
The biggest thing that keeps me focused is my motivation to keep living my life being as active as I can and for me that means taking my medication as prescribed. It is important for me to continue to find motivation in everything I do, everyday.
Check back on January 26th for Joni’s next journal entry.
I take my Rebif shots on Sunday, Tuesday, and Thursday. It amazes me how involved my friends are with my medication management. For instance, a few Sundays ago I had some people over for a cook out. As the evening dwindled down, one of my friends asked, “Hey, isn’t it shot night?”
On top of having others involved with my medication management, I am also very active in managing it. What helps me to be compliant is building routines. Every Sunday, a group of my friends gets together for dinner and to watch our favorite TV show. I use this weekly gathering as a reminder to restart my shots for the week. I have Pilates class on Tuesdays and Thursdays and also use these classes as a reminder to take my shots that evening.
The biggest thing that keeps me focused is my motivation to keep living my life being as active as I can and for me that means taking my medication as prescribed. It is important for me to continue to find motivation in everything I do, everyday.
Check back on January 26th for Joni’s next journal entry.
Posted by: Joni, Tuesday, January 12, 2010
Friday, October 30, 2009
Knowing It's OK To Ask for Help from Others - Part 2
As I mentioned, when I learned to ask for help it was such an enlightening moment for me that I decided to try it again.
I'm very fortunate to live very close to two of my friends, Julie and Kevin. As I mentioned earlier, I recently moved and of course was living out of boxes. It's okay to live like that for a little while, but at some point you just need to unpack. A large part of my move included donating items I was no longer using.
As I unpacked, the pile that needed to be taken to the donation center continued to grow. I could have loaded my car by myself, made the trip to the donation center and then unloaded the car by myself. However, it would have been an all-day event. Using my new found ability to ask for help, I asked Julie and Kevin for assistance. Of course they said "yes" and we were able to complete the task in only two hours.
It was extremely liberating to be able to ask for and accept help from others. I've definitely learned that I need to speak up and ask for help. Asking for help has not made me any less of an independent person.
I'm very fortunate to live very close to two of my friends, Julie and Kevin. As I mentioned earlier, I recently moved and of course was living out of boxes. It's okay to live like that for a little while, but at some point you just need to unpack. A large part of my move included donating items I was no longer using.
As I unpacked, the pile that needed to be taken to the donation center continued to grow. I could have loaded my car by myself, made the trip to the donation center and then unloaded the car by myself. However, it would have been an all-day event. Using my new found ability to ask for help, I asked Julie and Kevin for assistance. Of course they said "yes" and we were able to complete the task in only two hours.
It was extremely liberating to be able to ask for and accept help from others. I've definitely learned that I need to speak up and ask for help. Asking for help has not made me any less of an independent person.
Posted by: Joni, Friday, October 30, 2009
Wednesday, September 30, 2009
Knowing It's OK To Ask For Help From Others
I am a fiercely independent woman. Most of the time, I'm also extremely impatient. So rather than ask for help, I just do it myself. However, I learned that I was doing myself and those in my life an injustice by not asking for help.
For example, I remember when I bought a new house. Of course with any new home there were many things that needed to be completed. One of the biggest things was painting as much of the new home as I could before I moved in. This is a large task for anyone, much less someone suffering from MS-related fatigue. It was also going to be very expensive to have someone come in and do it for me. So I thought of the advice that I received from a very wise friend. He said that sometimes our family and friends want to help us.
If you think about it, many of our friends and family aren't sure how to deal with us having MS. For many of them, offering us help is their way of dealing with our MS. So I asked my parents if they would be available to help me paint and they were so excited to help!
We took our time and spent three days painting my new home. I moved out of my parents home many years ago so the best part of the whole deal was just getting to spend time with them. Getting my house painted was just an added bonus.
This was the first step to me learning to ask others for help.
For example, I remember when I bought a new house. Of course with any new home there were many things that needed to be completed. One of the biggest things was painting as much of the new home as I could before I moved in. This is a large task for anyone, much less someone suffering from MS-related fatigue. It was also going to be very expensive to have someone come in and do it for me. So I thought of the advice that I received from a very wise friend. He said that sometimes our family and friends want to help us.
If you think about it, many of our friends and family aren't sure how to deal with us having MS. For many of them, offering us help is their way of dealing with our MS. So I asked my parents if they would be available to help me paint and they were so excited to help!
We took our time and spent three days painting my new home. I moved out of my parents home many years ago so the best part of the whole deal was just getting to spend time with them. Getting my house painted was just an added bonus.
This was the first step to me learning to ask others for help.
Posted by: Joni, Wednesday, September 30, 2009
Monday, August 31, 2009
Taking "Me" Time
I really like to help others and it's very hard for me to say "no" to anyone. I often overbook myself, trying to spend time with everyone and accomplish all that I want to.
But even with all that I try to do for others; I have learned the importance of taking time for myself. Sometimes I have to travel a lot for work. One time, I had a day in between business trips in which I didn't have to work and most of my friends did. I seized this opportunity to take some "me" time. My "me" time was a trip to the salon to have a pedicure. The best part of the day was being able to leave my cell phone at home and just relax. It was good to have a day to recharge my batteries, so to speak, before I was off traveling again.
Another "me" time activity that I enjoy is going to the movies alone. I know most of you are thinking "I could never go to the movies alone!", but I'm telling you it is one of my favorite things to do. Again, it's great because you have to turn off your cell phone, allowing for a two-hour escape.
Whenever I do get some "me" time, I'm so passionate about it that I do whatever I can to protect it. If it's been a while since I've had some "me" time, I make sure to actually schedule it in my planner. That way I know that it will happen and I can tell people that I'm busy at that time and mean it.
But even with all that I try to do for others; I have learned the importance of taking time for myself. Sometimes I have to travel a lot for work. One time, I had a day in between business trips in which I didn't have to work and most of my friends did. I seized this opportunity to take some "me" time. My "me" time was a trip to the salon to have a pedicure. The best part of the day was being able to leave my cell phone at home and just relax. It was good to have a day to recharge my batteries, so to speak, before I was off traveling again.
Another "me" time activity that I enjoy is going to the movies alone. I know most of you are thinking "I could never go to the movies alone!", but I'm telling you it is one of my favorite things to do. Again, it's great because you have to turn off your cell phone, allowing for a two-hour escape.
Whenever I do get some "me" time, I'm so passionate about it that I do whatever I can to protect it. If it's been a while since I've had some "me" time, I make sure to actually schedule it in my planner. That way I know that it will happen and I can tell people that I'm busy at that time and mean it.
Posted by: Joni, Monday, August 31, 2009
Friday, July 31, 2009
Balancing Work and MS
As I mentioned earlier, I do work a full time job and occasionally it does get overwhelming. Over the past few years, I have learned a few tricks to balance my workload and my life living with relapsing Multiple Sclerosis.
The biggest thing that helps me is keeping a To Do list. Everyone forgets something from time to time, but by keeping my workload organized and maintaining a To Do list, I manage to keep most of it under control. Take today for example. There were four things that I really wanted to get done while I was at work. So I listed them in order of priority in my planner, starting with what needed to be done first. I only completed two things on that list and that's okay. I carried over the other two things in my planner to do tomorrow. I'm also not going to add anything else to tomorrow's To Do list so as to not be overwhelmed.
Another thing that I try to do is have everything ready to go the night before so that I can sleep in a little bit longer in the morning. I also keep my bag for work near the door, so I can grab it and go.
And finally, I know my limitations. I spend most of my day at work on my feet but by the time the afternoon rolls around, I know if I'm going to need a rest. I keep a chair nearby so that I can take a break and save energy to make it through the whole day.
By controlling what I can, I make sure that MS is as small an interruption as possible in my work life.
The biggest thing that helps me is keeping a To Do list. Everyone forgets something from time to time, but by keeping my workload organized and maintaining a To Do list, I manage to keep most of it under control. Take today for example. There were four things that I really wanted to get done while I was at work. So I listed them in order of priority in my planner, starting with what needed to be done first. I only completed two things on that list and that's okay. I carried over the other two things in my planner to do tomorrow. I'm also not going to add anything else to tomorrow's To Do list so as to not be overwhelmed.
Another thing that I try to do is have everything ready to go the night before so that I can sleep in a little bit longer in the morning. I also keep my bag for work near the door, so I can grab it and go.
And finally, I know my limitations. I spend most of my day at work on my feet but by the time the afternoon rolls around, I know if I'm going to need a rest. I keep a chair nearby so that I can take a break and save energy to make it through the whole day.
By controlling what I can, I make sure that MS is as small an interruption as possible in my work life.
Posted by: Joni, Friday, July 31, 2009
