I found out today that tomorrow, 5/27/09, is the very first World MS Day. You can check out the website at www.worldmsday.org and be sure to check out the video....pretty powerful!
I think that World MS Day will grow over the years and I will plan to get involved next year. I won't be doing anything this year since I just found out today that it will be the last Wednesday in May. However, the least we can do is register and show our support for the cause (even if we can't donate in this current economic time). While I was searching through the list of people that have registered on the website for World MS Day, I felt comforted by the fact that we truly are NOT alone in this fight!
I read that 2 million people world-wide have MS and I got to thinking about how many people are actually affected....because this illness does not affect just the person that has it. It affects those around the individual that have MS as well. For me, it directly affects my children. But then, it also affects my brother, some of my extended family (even though they aren't close), my friends and my co-workers so that would bring the count up to at least 15 people. I think if we found the number of people affected by MS and not just those that have it...that number would be astounding!
For now, I'm off to bed because I managed to get a cold over this last weekend and need as much sleep as I can muster up.
For the rest of this week, especially tomorrow, remember:
For without hope, there would be no goals and no desire to dream, believe or fight for a cure!
Until next time....
~Hope~
Tuesday, May 26, 2009
Monday, May 18, 2009
Daily Challenges....
Today I was at work, it was busy and I realized just how challenging each day can be! I felt great first thing in the morning and as the day went on, I just started dragging. I couldn't help but realize that everyone with MS has some kind of daily challenge that they are faced with. I work as a customer service rep and it gets busy from about May to November. Last summer I made it through, but now that I have a more clear understanding of my MS...I wonder if I will make it through another summer and more to come...hmmm?!
Let me explain my job a bit more....I work for a fairly small company and therefore there are only 5 of us in customer service. This means that each person has a great deal of responsibility each day. Now that we are getting busy, it's no surprise that I enter almost 30 orders per day and answer about 50 phone calls (guestimating on that one). It means that each CS rep has to be ready to handle whatever the day throws at them....so what happens when you are already challenged just by waking up in the morning?! This is a question that frightens me because I know the logical response would be....it might be time to find something different that will better suit my needs, but the truth is that I love my job and am not ready to find something different (especially in the current state of the economy). This poses another few questions....what are my daily challenges and how can I ensure that I can handle my job during the busy season with my MS???
My daily challenges:
1. Chronic Dizziness and Vertigo Spells- I have lived with chronic dizziness since 2003 and so I'm no stranger to how it affects me and is easily triggered by stress. The more stress, the more frequent the vertigo spells....ugh. Over the years, I have learned many relaxation techniques and learned how to quickly let things go to reduce stress. However, I am certainly no expert and it's almost impossible to do these things when work can be chaotic.
2. Auditory Processing Disorder - My ENT doctor finally agreed that I have this issue. It would have been easier if I had just hearing loss so I could have a hearing aid and be fine. With APD, there is nothing to fix how my brain processes the things I hear. Therefore, I am constantly asking people to repeat what they say to ensure I have heard it correctly. This poses to be one of the most challenging issues in the busy season at my work.
3. MS Fatigue - I should be getting between 10 to 12 hours of sleep per night, but as a single mother of twins that has to work full time...that is impossible! So I'm left to make due with about 7 to 9 hours of sleep instead. I start the day out feeling decent, but then as the day goes on, I become tired and then exhausted. I have started taking a medication that seems to help this...but what I'm noticing is that it helps so I don't feel like I'm going to buckle from fatigue, but still leaves me feeling tired throughout the day. This is going to be a chronic daily challenge because I will most likely have to continue naps after work since I can't take one at lunch and there is no way to get off earlier in the afternoon to be able to take one sooner than about 6pm :(
4. Heat Sensitivity - This is not a problem in the cooler months, except when I try to exercise. Now that we are heading into summer, this will be a problem...especially without a/c in my car (it's broke and so am I...LOL). I try to stay indoors as much as I can when the sun is out, but that is impossible when you have to drive, go outside to smoke, etc. This will intensify the problems with MS Fatigue and Chronic Dizziness.
5. Memory/Cognitive issues - This one is the least clear as far as the impact to my daily life at the moment. I have noticed that I can be rolling along in a conversation and totally lose my thought process and have to just stop because it is gone. I know we all struggle with this one a little bit, but it has been worsened pretty severely since last summer and is seriously frustrating and embarrassing when in the middle of a conversation with a customer. I'm also noticing that I can't remember things that I should know and had no problem remembering last year.
There are other issues that can challenge me, but they vary by day and not really worth mentioning right at the moment. The 5 listed above are the most frustrating and concerning, especially in relation to my job. Some days (like today)....I just want to give up and say....you know, I'm not cut out for this anymore and DONE! However, the fact that I have to support my twins and know that now is not the time to be quitting a job along with the fact that I should work as long as possible before giving into disability keeps pushing me forward.
But then, what the heck do I do about these issues?!
Honestly....I haven't figured that one out yet and really have not a clue as to where to start. I have thought of many different things and some are way out of the ballpark of possibilities and others are possible (I think). I have already started doing things like a "To Do" list and putting follow up reminders in my Outlook calendar at work.....so far those have helped with some of the memory/cognitive issues. I have thought about using an ear plug for the noise level at work so that I'm able to focus on my phone calls, but that could be a problem because I would have to put one in (only one because my headset is on the other ear) when I get a call and then take it out because there are things/conversations I have to have w/ my co-workers and then put it back in for a call and then take it back out....ugh! I have suggested over and over again, that the company do something about the noise level and after 2 years of asking, suggesting, begging and being so close to a resolution....we can't do anything due to the economic downturn. So, I may just be forced to try the earplug thing and hope that it helps/works. Now, for the problem with losing my thoughts mid-conversation, I'm sure I could get some good tips/suggestions from an occupational therapist, but if I can't make an appointment for a weekend....it will have to wait until slow season because it's just too busy to take time off work for that one. I guess I will just have to continue to stumble and hope that it doesn't have much of an impact. For the heat sensitivity, I am having my a/c in my car looked at tomorrow in hopes that it won't cost must to fix and maybe I can afford to do it soon. Otherwise, it will have to wait until beginning of next year. I've also considered purchasing a fan for my desk at work and plan to do that this weekend. For the MS Fatigue, I'm just going to have to try to get as much sleep at night and take naps after work as needed....plain and simple. For the chronic dizziness & vertigo spells, I will just have to try to keep calm and not allow things at work to stress me out as best I can and then practice relaxation techniques in the evenings and on weekends to try to help.
Any suggestions/comments are always welcome!
Until next time....
~Hope~
Let me explain my job a bit more....I work for a fairly small company and therefore there are only 5 of us in customer service. This means that each person has a great deal of responsibility each day. Now that we are getting busy, it's no surprise that I enter almost 30 orders per day and answer about 50 phone calls (guestimating on that one). It means that each CS rep has to be ready to handle whatever the day throws at them....so what happens when you are already challenged just by waking up in the morning?! This is a question that frightens me because I know the logical response would be....it might be time to find something different that will better suit my needs, but the truth is that I love my job and am not ready to find something different (especially in the current state of the economy). This poses another few questions....what are my daily challenges and how can I ensure that I can handle my job during the busy season with my MS???
My daily challenges:
1. Chronic Dizziness and Vertigo Spells- I have lived with chronic dizziness since 2003 and so I'm no stranger to how it affects me and is easily triggered by stress. The more stress, the more frequent the vertigo spells....ugh. Over the years, I have learned many relaxation techniques and learned how to quickly let things go to reduce stress. However, I am certainly no expert and it's almost impossible to do these things when work can be chaotic.
2. Auditory Processing Disorder - My ENT doctor finally agreed that I have this issue. It would have been easier if I had just hearing loss so I could have a hearing aid and be fine. With APD, there is nothing to fix how my brain processes the things I hear. Therefore, I am constantly asking people to repeat what they say to ensure I have heard it correctly. This poses to be one of the most challenging issues in the busy season at my work.
3. MS Fatigue - I should be getting between 10 to 12 hours of sleep per night, but as a single mother of twins that has to work full time...that is impossible! So I'm left to make due with about 7 to 9 hours of sleep instead. I start the day out feeling decent, but then as the day goes on, I become tired and then exhausted. I have started taking a medication that seems to help this...but what I'm noticing is that it helps so I don't feel like I'm going to buckle from fatigue, but still leaves me feeling tired throughout the day. This is going to be a chronic daily challenge because I will most likely have to continue naps after work since I can't take one at lunch and there is no way to get off earlier in the afternoon to be able to take one sooner than about 6pm :(
4. Heat Sensitivity - This is not a problem in the cooler months, except when I try to exercise. Now that we are heading into summer, this will be a problem...especially without a/c in my car (it's broke and so am I...LOL). I try to stay indoors as much as I can when the sun is out, but that is impossible when you have to drive, go outside to smoke, etc. This will intensify the problems with MS Fatigue and Chronic Dizziness.
5. Memory/Cognitive issues - This one is the least clear as far as the impact to my daily life at the moment. I have noticed that I can be rolling along in a conversation and totally lose my thought process and have to just stop because it is gone. I know we all struggle with this one a little bit, but it has been worsened pretty severely since last summer and is seriously frustrating and embarrassing when in the middle of a conversation with a customer. I'm also noticing that I can't remember things that I should know and had no problem remembering last year.
There are other issues that can challenge me, but they vary by day and not really worth mentioning right at the moment. The 5 listed above are the most frustrating and concerning, especially in relation to my job. Some days (like today)....I just want to give up and say....you know, I'm not cut out for this anymore and DONE! However, the fact that I have to support my twins and know that now is not the time to be quitting a job along with the fact that I should work as long as possible before giving into disability keeps pushing me forward.
But then, what the heck do I do about these issues?!
Honestly....I haven't figured that one out yet and really have not a clue as to where to start. I have thought of many different things and some are way out of the ballpark of possibilities and others are possible (I think). I have already started doing things like a "To Do" list and putting follow up reminders in my Outlook calendar at work.....so far those have helped with some of the memory/cognitive issues. I have thought about using an ear plug for the noise level at work so that I'm able to focus on my phone calls, but that could be a problem because I would have to put one in (only one because my headset is on the other ear) when I get a call and then take it out because there are things/conversations I have to have w/ my co-workers and then put it back in for a call and then take it back out....ugh! I have suggested over and over again, that the company do something about the noise level and after 2 years of asking, suggesting, begging and being so close to a resolution....we can't do anything due to the economic downturn. So, I may just be forced to try the earplug thing and hope that it helps/works. Now, for the problem with losing my thoughts mid-conversation, I'm sure I could get some good tips/suggestions from an occupational therapist, but if I can't make an appointment for a weekend....it will have to wait until slow season because it's just too busy to take time off work for that one. I guess I will just have to continue to stumble and hope that it doesn't have much of an impact. For the heat sensitivity, I am having my a/c in my car looked at tomorrow in hopes that it won't cost must to fix and maybe I can afford to do it soon. Otherwise, it will have to wait until beginning of next year. I've also considered purchasing a fan for my desk at work and plan to do that this weekend. For the MS Fatigue, I'm just going to have to try to get as much sleep at night and take naps after work as needed....plain and simple. For the chronic dizziness & vertigo spells, I will just have to try to keep calm and not allow things at work to stress me out as best I can and then practice relaxation techniques in the evenings and on weekends to try to help.
Any suggestions/comments are always welcome!
Until next time....
~Hope~
Sunday, May 3, 2009
Everyone has an MS story....what's yours?
Almost everyone knows someone that has MS. Those that have MS have a story to tell and it's not going to be the same as anyone else.....so, if interested, post your story right here as a response to this blog.
Here is my story:
At the beginning of June 2008, I had a severe headache and wound up in the emergency room the first night. The second headache caused the left side of my face to go numb and was a bit scary. The headaches continued for the entire week and ended on June 7th (my birthday). My doctor and neurologist were concerned about internal bleeding in the brain, stroke or something more serious. I had a CT scan on June 6th and luckily that ruled out anything immediately life-threatening. I met with my neurologist on June 25th and he saw a “white spot” on my CT scan and wanted me to go have an MRI done to further investigate what was going on. Unfortunately the headaches had triggered a whole bunch of problems including increasing my chronic dizziness (that I have had since 2003), blurry vision, etc. which made doing anything challenging, but I had to work and attempt to take care of my children with little help. I went in for the MRI scan on July 1st and awaited the results. My neurologist called the next afternoon and told me that it looked like Multiple Sclerosis and was in shock that I was walking, hearing and seeing due to the size of the damage (called demylination) to my brain stem. I met with my neurologist again on July 10th and we looked at the MRI scan images and decided it was best to get a lumbar puncture (also called spinal tap) to help confirm MS. I had the lumbar puncture on July 14th and again awaited the results. On July 22nd, my neurologist called and told me that there was not much doubt that it was in fact MS. I won’t go into too much more detail (or else this will end up being a long book), but I started medication in August, a daily injection of Copaxone. This medication doesn’t treat the problems that I’m left with, but is supposed to reduce the frequency of attacks and delay the disabling impact of the disease. We won’t really know it is working until my next MRI, which will happen later this year. I have spent the last nine months learning how to live with this chronic illness and increased medical bills, etc. The good news that comes out of all this….is that I’m not completely disabled nor am I dying. I am still able to work, walk, see & hear.
Until next time....
~Hope~
Here is my story:
At the beginning of June 2008, I had a severe headache and wound up in the emergency room the first night. The second headache caused the left side of my face to go numb and was a bit scary. The headaches continued for the entire week and ended on June 7th (my birthday). My doctor and neurologist were concerned about internal bleeding in the brain, stroke or something more serious. I had a CT scan on June 6th and luckily that ruled out anything immediately life-threatening. I met with my neurologist on June 25th and he saw a “white spot” on my CT scan and wanted me to go have an MRI done to further investigate what was going on. Unfortunately the headaches had triggered a whole bunch of problems including increasing my chronic dizziness (that I have had since 2003), blurry vision, etc. which made doing anything challenging, but I had to work and attempt to take care of my children with little help. I went in for the MRI scan on July 1st and awaited the results. My neurologist called the next afternoon and told me that it looked like Multiple Sclerosis and was in shock that I was walking, hearing and seeing due to the size of the damage (called demylination) to my brain stem. I met with my neurologist again on July 10th and we looked at the MRI scan images and decided it was best to get a lumbar puncture (also called spinal tap) to help confirm MS. I had the lumbar puncture on July 14th and again awaited the results. On July 22nd, my neurologist called and told me that there was not much doubt that it was in fact MS. I won’t go into too much more detail (or else this will end up being a long book), but I started medication in August, a daily injection of Copaxone. This medication doesn’t treat the problems that I’m left with, but is supposed to reduce the frequency of attacks and delay the disabling impact of the disease. We won’t really know it is working until my next MRI, which will happen later this year. I have spent the last nine months learning how to live with this chronic illness and increased medical bills, etc. The good news that comes out of all this….is that I’m not completely disabled nor am I dying. I am still able to work, walk, see & hear.
Until next time....
~Hope~
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