Hope to see y'all there!
Monday, August 2, 2010
Moving blog...
I have decided to start blogging again. However, I'm moving my blog to a new email addy. If you'd like to continue following me...please check out my new blog spot at http://ladyofhope143.blogspot.com/
Tuesday, June 9, 2009
Sleep....necessity or excuse?!
I was pondering the other day (as I frequently do) about sleep. I know that I have MS Fatigue...there is no doubt about that! To be honest, I don't do all that I should to combat it...there is no doubt about that either! But, when my neurologist told me that I should be getting 10 to 12 hours of sleep per night....I started laughing! What?! Tell me what working parent in today's world is able to get 10 to 12 hours of sleep per night...ha!
On top of the impossible number of hours of sleep I'm supposed to get....I need to watch what I eat, exercise, stop smoking, conserve energy throughout the day and reduce my stress...again I say...ha! I am absolutely not opposed to doing all of these things, but when you are a single mother of twins with no support and have to work full time (at a pretty high stress job none the less)....kinda puts a kink into doing what is necessary to reduce the MS fatigue problem and all that is needed to control it...hmmm!
Since I am still newly diagnosed and am "learning the ropes"....I continually ponder these things. The easiest thing to do was to work on the sleep thing first and slowly incorporate the others. Right from the start it was very clear that not getting enough sleep would make everything difficult. I knew that I needed to go to bed at a "decent hour" and not get up as early in the mornings. However, as I continued my journey and fell into a spell of depression, sleep became a "safe haven". I didn't have to deal with anything and could basically hide. A few months into being depressed about my new diagnosis, I realized that this wasn't going to work. So, I began my attempt to figure out the best method of getting enough sleep while still trying to work full time and be a mom. I began searching for advise from friends, doctors and books trying to figure out what to do. Unfortunately, I couldn't bring myself to go to bed earlier than 10 PM because it was too soon after the kiddos went to sleep and I needed some "me time". I had stopped waking up at 4 AM to get ready for work and started getting up at 5:30 AM instead....removing time for makeup and some prep time for the day. I fell into a routine of get up at 5:30 AM and making it through my work day and coming home completely wiped so I would end up laying down for 2-3 hours and wake up in time to send the kiddos off to bed. Then I would stay up for about an hour or two and go back to sleep for another 6.5 hours. With this routine, I was averaging about 8-9.5 hours of sleep most of the time and it seemed to help. But after about 6 months of this routine, I started feeling horrible because I was basically missing out on any time with my kiddos and I just couldn't stand that! So....in April, I talked to my neurologist about a medicine that I had read about on webmd.com (love that site!!!) called Provigil. Apparently, it was something used to combat MS Fatigue. I thought...if this medicine could help me get through the day and not have to take a nap...what an awesome feat that would be! My neurologist gave me some samples and told me to try it and let him know how it goes. I started taking the medicine the day after my appointment and within a few days, I noticed that I was still feeling tired....BUT...I wasn't feeling exhausted....YAY!!! I continued on the medication for a full month and it did help...not as much as I had hoped, but I think that was because we started out with only 1/2 a pill to see what it would do. I think a full pill will be better (especially now that summer is coming) and have every plan to try it (with neurologist's approval of course).
Okay, so what does this rambling have to do with my question?! Everything :)
Once I realized that the medicine helped most days....I realized that I had also been using sleep as an excuse to get out of everything from events to laundry. I think I was angry with myself for two days before I realized that I can't beat myself up over it. I thought back and realized that things just aren't the same for me anymore. I would make grand attempts every Sunday (not Saturday because that is my dedicated sloth day) to do alot of things around our home and would wipe myself out trying to do too much (which used to not be too much) and therefore wasted energy I was supposed to be conserving to face another week. My point is that....sleep is an absolute necessity for people with MS (especially those w/ MS fatigue), but I hope to help others realize not to get trapped in a routine of using it as an excuse and truly evaluate if you need to skip something for the right reason....like I learned the hard way :)
Until next time....
~Hope~
On top of the impossible number of hours of sleep I'm supposed to get....I need to watch what I eat, exercise, stop smoking, conserve energy throughout the day and reduce my stress...again I say...ha! I am absolutely not opposed to doing all of these things, but when you are a single mother of twins with no support and have to work full time (at a pretty high stress job none the less)....kinda puts a kink into doing what is necessary to reduce the MS fatigue problem and all that is needed to control it...hmmm!
Since I am still newly diagnosed and am "learning the ropes"....I continually ponder these things. The easiest thing to do was to work on the sleep thing first and slowly incorporate the others. Right from the start it was very clear that not getting enough sleep would make everything difficult. I knew that I needed to go to bed at a "decent hour" and not get up as early in the mornings. However, as I continued my journey and fell into a spell of depression, sleep became a "safe haven". I didn't have to deal with anything and could basically hide. A few months into being depressed about my new diagnosis, I realized that this wasn't going to work. So, I began my attempt to figure out the best method of getting enough sleep while still trying to work full time and be a mom. I began searching for advise from friends, doctors and books trying to figure out what to do. Unfortunately, I couldn't bring myself to go to bed earlier than 10 PM because it was too soon after the kiddos went to sleep and I needed some "me time". I had stopped waking up at 4 AM to get ready for work and started getting up at 5:30 AM instead....removing time for makeup and some prep time for the day. I fell into a routine of get up at 5:30 AM and making it through my work day and coming home completely wiped so I would end up laying down for 2-3 hours and wake up in time to send the kiddos off to bed. Then I would stay up for about an hour or two and go back to sleep for another 6.5 hours. With this routine, I was averaging about 8-9.5 hours of sleep most of the time and it seemed to help. But after about 6 months of this routine, I started feeling horrible because I was basically missing out on any time with my kiddos and I just couldn't stand that! So....in April, I talked to my neurologist about a medicine that I had read about on webmd.com (love that site!!!) called Provigil. Apparently, it was something used to combat MS Fatigue. I thought...if this medicine could help me get through the day and not have to take a nap...what an awesome feat that would be! My neurologist gave me some samples and told me to try it and let him know how it goes. I started taking the medicine the day after my appointment and within a few days, I noticed that I was still feeling tired....BUT...I wasn't feeling exhausted....YAY!!! I continued on the medication for a full month and it did help...not as much as I had hoped, but I think that was because we started out with only 1/2 a pill to see what it would do. I think a full pill will be better (especially now that summer is coming) and have every plan to try it (with neurologist's approval of course).
Okay, so what does this rambling have to do with my question?! Everything :)
Once I realized that the medicine helped most days....I realized that I had also been using sleep as an excuse to get out of everything from events to laundry. I think I was angry with myself for two days before I realized that I can't beat myself up over it. I thought back and realized that things just aren't the same for me anymore. I would make grand attempts every Sunday (not Saturday because that is my dedicated sloth day) to do alot of things around our home and would wipe myself out trying to do too much (which used to not be too much) and therefore wasted energy I was supposed to be conserving to face another week. My point is that....sleep is an absolute necessity for people with MS (especially those w/ MS fatigue), but I hope to help others realize not to get trapped in a routine of using it as an excuse and truly evaluate if you need to skip something for the right reason....like I learned the hard way :)
Until next time....
~Hope~
Sunday, June 7, 2009
A sunny day...or is it?
Most people look at the weather forecast or look out their window and think "How wonderful, it's going to be a nice, warm, sunny day!"
I, however, check the weather forecast and look out my window and think "Great, another hot, sunny day with no cloud cover?!"
Why do I sound so gloomy about a weather forecast of 83 and mostly sunny?! Because I have MS and these type of days are just plain aweful! I want to stay inside my nice cool apartment and not even attempt to face the sun. I know that there is a lot of information out there about how the sun is soooo good for your health with the Vitamin D that it gives you, but when it makes you tired, sticky (when it's humid) and dizzy....not so exciting anymore! I'd rather get my Vitamin D from a pill than go outside and face that!
As I was driving in the heat yesterday morning (and yes, it was already hot by 10 AM), I began to ponder some questions (since I'm a curious person) - Do other people with MS hate the summer as much as I do? Do other people with MS just want to hide from the sun like I do? What is the best climate and/or place to live when you have MS?
When I arrived back home, I sat down at my computer and started a search for the answer to the last question, what his the best climate and/or place to live when you have MS? - I did not find what I was hoping for....the answer. What I did find was several places where people had discussed this question and what I found was.....the statement that there isn't one exact place to live that is going to keep your MS in check. For some, warmer environments seem to help (Arizona being one that was mentioned a couple times). For others, areas like the Pacific Northwest seem to be better. Another person mentioned that they felt the best place to live regardless of your ailment would be San Diego, CA. What I found was that, as with everything associated with MS, it all depends on the person that has MS and what their symptoms are.
For me, I currently live in Colorado and am not sure it is the best place for me to live. The reason I feel this way is because there is very little Spring and Fall, but rather, many months of Winter and Summer. I recall living in Washington state as a child and have fond memories of the rainy, cool weather. Now that I am an adult, I would love to move back to Washington state simply based on those fond memories, but as a friend pointed out, there is no guarantee that would be better for my health. So....after thinking about what this friend said, I have decided that I would like to go visit Washington state on a vacation to sort of "test" the climate and see if it is, in fact, better for me than Colorado.
For now, I am staying right here in Colorado and not looking forward to this summer, but will make the best of it.
Until next time....
~Hope~
I, however, check the weather forecast and look out my window and think "Great, another hot, sunny day with no cloud cover?!"
Why do I sound so gloomy about a weather forecast of 83 and mostly sunny?! Because I have MS and these type of days are just plain aweful! I want to stay inside my nice cool apartment and not even attempt to face the sun. I know that there is a lot of information out there about how the sun is soooo good for your health with the Vitamin D that it gives you, but when it makes you tired, sticky (when it's humid) and dizzy....not so exciting anymore! I'd rather get my Vitamin D from a pill than go outside and face that!
As I was driving in the heat yesterday morning (and yes, it was already hot by 10 AM), I began to ponder some questions (since I'm a curious person) - Do other people with MS hate the summer as much as I do? Do other people with MS just want to hide from the sun like I do? What is the best climate and/or place to live when you have MS?
When I arrived back home, I sat down at my computer and started a search for the answer to the last question, what his the best climate and/or place to live when you have MS? - I did not find what I was hoping for....the answer. What I did find was several places where people had discussed this question and what I found was.....the statement that there isn't one exact place to live that is going to keep your MS in check. For some, warmer environments seem to help (Arizona being one that was mentioned a couple times). For others, areas like the Pacific Northwest seem to be better. Another person mentioned that they felt the best place to live regardless of your ailment would be San Diego, CA. What I found was that, as with everything associated with MS, it all depends on the person that has MS and what their symptoms are.
For me, I currently live in Colorado and am not sure it is the best place for me to live. The reason I feel this way is because there is very little Spring and Fall, but rather, many months of Winter and Summer. I recall living in Washington state as a child and have fond memories of the rainy, cool weather. Now that I am an adult, I would love to move back to Washington state simply based on those fond memories, but as a friend pointed out, there is no guarantee that would be better for my health. So....after thinking about what this friend said, I have decided that I would like to go visit Washington state on a vacation to sort of "test" the climate and see if it is, in fact, better for me than Colorado.
For now, I am staying right here in Colorado and not looking forward to this summer, but will make the best of it.
Until next time....
~Hope~
Tuesday, May 26, 2009
World MS Day 5/27/09
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~
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~
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~
Saturday, April 25, 2009
A journey with MS...
I have spent the last 9 months learning how to cope with a chronic illness....Multiple Sclerosis. I have decided that in order to share with others that I am going to start blogging about it. I have blogged a little bit about it, but not enough. I have always believed that being able to write about things is healthy, but then I get too busy and don't make time to do it....that stops now :)
To be on the safe side, I will state this disclosure...
I want to let anyone reading this know that I have no medical background and am only speaking from my own personal experiences and therefore anything I write cannot be claimed as fact.
Here we go...
When I was officially diagnosed on 7/22/08 with Multiple Sclerosis, there were so many emotions that ran through my body that I almost fell over. The first two that hit me were relief and fear. I was relieved that I wasn't dying, but was in fear of what was going to happen to me and my children. Then shock set in....and the question, is this real?! One would think that 3 emotions would be enough for anyone to handle, but this kind of diagnosis actually floods any number of emotions through you. Next was sadness and the ultimate question, why me?! Next came anger....and that one is ugly!
As I look back, I was basically numb for several months until I was able to start dealing with all of the emotions that flooded my system. I would just get up and go to work, get through the day and come home. When I got home, I would just zone out in games on the computer, not really dealing with anything. I think this is a natural human response when one is flooded with emotions. We have a tendency to just shut down at first. And then at some point something clicks (whatever the trigger may be) and we turn back on the emotion switch and actually start dealing with them. For me personally, I have been through a lot of traumatic situations and events in my young life (as many call it....and rightfully so since I'm only 28) and these events have helped me to know how to quickly move past the emotions and just get down to business. The first business to address was whether to start treatment right away or not. I made the decision to start medication right away because in general starting treatment early was necessary to hopefully reduce exacerbations (also called attacks) and to prevent further damage to my CNS (Central Nervous System). There are a bunch of medications out there for MS so I had to sit down and really look at them and talk to others about them to decide which one was best for me. Since MS is so very different for each person that has it, each person with it will have to do their own research and some may even decide medication isn't right for them at that moment. However, there is a lot of information out there to support the idea that starting treatment early gives you the best possible outcome to prevent or delay the disabling impact of the disease.
I also began learning everything I possibly could about MS because I feel that education is very important so that you know what you are dealing with. Actually it was funny, I went to the local library and probably brought home about 20 books about MS. Once I got the books home, I started going through them and realized that many of them were outdated and a few were too technical and boring. I ended up returning most of them to the library and only keeping 2 to read. The two that I read were "Multiple Sclerosis: The Ultimate User-Friendly Guide (2nd Edition)" from The Rocky Mountain Multiple Sclerosis Center Guild and "Multiple Sclerosis" New Hope and Practical Advice for people with MS and their families" by Louis J Rosner, M.D. and Shelley Ross. I have also picked up another book called "Multiple Sclerosis for Dummies" that has been extremely helpful. In my opinion, these are probably the best books to start with for anyone with MS and family/friends that are supporting someone with MS.
For now, I will end this blog session.
Until next time.....stay positive! :)
~Hope~
To be on the safe side, I will state this disclosure...
I want to let anyone reading this know that I have no medical background and am only speaking from my own personal experiences and therefore anything I write cannot be claimed as fact.
Here we go...
When I was officially diagnosed on 7/22/08 with Multiple Sclerosis, there were so many emotions that ran through my body that I almost fell over. The first two that hit me were relief and fear. I was relieved that I wasn't dying, but was in fear of what was going to happen to me and my children. Then shock set in....and the question, is this real?! One would think that 3 emotions would be enough for anyone to handle, but this kind of diagnosis actually floods any number of emotions through you. Next was sadness and the ultimate question, why me?! Next came anger....and that one is ugly!
As I look back, I was basically numb for several months until I was able to start dealing with all of the emotions that flooded my system. I would just get up and go to work, get through the day and come home. When I got home, I would just zone out in games on the computer, not really dealing with anything. I think this is a natural human response when one is flooded with emotions. We have a tendency to just shut down at first. And then at some point something clicks (whatever the trigger may be) and we turn back on the emotion switch and actually start dealing with them. For me personally, I have been through a lot of traumatic situations and events in my young life (as many call it....and rightfully so since I'm only 28) and these events have helped me to know how to quickly move past the emotions and just get down to business. The first business to address was whether to start treatment right away or not. I made the decision to start medication right away because in general starting treatment early was necessary to hopefully reduce exacerbations (also called attacks) and to prevent further damage to my CNS (Central Nervous System). There are a bunch of medications out there for MS so I had to sit down and really look at them and talk to others about them to decide which one was best for me. Since MS is so very different for each person that has it, each person with it will have to do their own research and some may even decide medication isn't right for them at that moment. However, there is a lot of information out there to support the idea that starting treatment early gives you the best possible outcome to prevent or delay the disabling impact of the disease.
I also began learning everything I possibly could about MS because I feel that education is very important so that you know what you are dealing with. Actually it was funny, I went to the local library and probably brought home about 20 books about MS. Once I got the books home, I started going through them and realized that many of them were outdated and a few were too technical and boring. I ended up returning most of them to the library and only keeping 2 to read. The two that I read were "Multiple Sclerosis: The Ultimate User-Friendly Guide (2nd Edition)" from The Rocky Mountain Multiple Sclerosis Center Guild and "Multiple Sclerosis" New Hope and Practical Advice for people with MS and their families" by Louis J Rosner, M.D. and Shelley Ross. I have also picked up another book called "Multiple Sclerosis for Dummies" that has been extremely helpful. In my opinion, these are probably the best books to start with for anyone with MS and family/friends that are supporting someone with MS.
For now, I will end this blog session.
Until next time.....stay positive! :)
~Hope~
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