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~
Tuesday, June 9, 2009
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~
Tuesday, April 14, 2009
Flower child...
Aha! I was looking for a term this weekend to describe how I've been feeling lately. I love songs that have a peace n love feel such as my latest fave "I'm Yours" by Jason Mraz and one of my long running faves "If Everyone Cared" by Nickelback. I was looking at terms like tree hugger, environmentalist and they just weren't right! Then I was talking with a friend tonight and she mentioned it.....FLOWER CHILD! Ah yes.....I was always told for years (in my teens) that I had been born in the wrong decade because I'm the classic definition of a flower child....and it has come back to me....and it is true! I love peace n harmony....I hate fighting of any kind! Although, disagreement is necessary for change to happen....it doesn't have to be a drag out fight as many of us make them these days. What a sense of calm and enlightenment came upon me when this familiar term returned to me via my friend.....ahhhh I feel home with it! Plus, I know that my purpose on this earth is to help others (although I'm still in process of discovering just the right avenue to do so) and part of that has got to be with helping people de-stress, appreciate each day and inspire them to look within for such peace that comes with such concepts. Now, I will admit I have not perfected these concepts, but each day that I'm given to practice is another opportunity to get better and better at doing so. I think that this inner desire for constant peace n love is the reason it bothers me so much when my children fight....even though I know that is precisely what siblings do....I still don't like it LOL
Hmmm....opens up a whole level of pondering and of course at the wrong time.....will have to incorporate it into dreams as it is now time to drift off to bed.
Until next time....peace n love :)~
~Hope~
Hmmm....opens up a whole level of pondering and of course at the wrong time.....will have to incorporate it into dreams as it is now time to drift off to bed.
Until next time....peace n love :)~
~Hope~
Monday, April 6, 2009
Tomorrow was never promised...
Tomorrow is never promised...
This thought as been passing through my head for the last week and there must be a reason. I frequently look to this world and am constantly amazed by how easy it is for each of us to get caught up in the hum drum of daily life and the drama and challenges that arise. Today I was crabby and realized how selfish being crabby is. Who am I to to snap at another human being that is doing their very best while they have the pleasure of being on this earth too?! I've pondered all day and still have no answer as to why I was crabby, but thankfully this co-worker pointed it out because I was able to change attitude course pretty quickly and better the rest of my day. This brought me back to thinking about how life is so precious and we truly should enjoy each and every day we are given....it is a gift!! Think....if we all made an effort to smile at someone each day or take a moment to help someone at the grocery store....what a difference we would feel?! I am an observer....I enjoy watching others interact with each other. There are so many opportunities available to us each day.....to remind each other that life is a gift and share love with one another.
I'm giggling because I'm tired enough right now that this may sound like rambling....I shall revisit this post tomorrow....LOL :)
For now....I will leave you with.....be kind to others, remember those that were kind to you and forget those that weren't.
Until next time...
~Hope~
This thought as been passing through my head for the last week and there must be a reason. I frequently look to this world and am constantly amazed by how easy it is for each of us to get caught up in the hum drum of daily life and the drama and challenges that arise. Today I was crabby and realized how selfish being crabby is. Who am I to to snap at another human being that is doing their very best while they have the pleasure of being on this earth too?! I've pondered all day and still have no answer as to why I was crabby, but thankfully this co-worker pointed it out because I was able to change attitude course pretty quickly and better the rest of my day. This brought me back to thinking about how life is so precious and we truly should enjoy each and every day we are given....it is a gift!! Think....if we all made an effort to smile at someone each day or take a moment to help someone at the grocery store....what a difference we would feel?! I am an observer....I enjoy watching others interact with each other. There are so many opportunities available to us each day.....to remind each other that life is a gift and share love with one another.
I'm giggling because I'm tired enough right now that this may sound like rambling....I shall revisit this post tomorrow....LOL :)
For now....I will leave you with.....be kind to others, remember those that were kind to you and forget those that weren't.
Until next time...
~Hope~
Tuesday, March 3, 2009
Ah parenting...
Being a parent is probably the most challenging part of my life. I have been a mother for 9 years now and my two beautiful children never cease to amaze me. Today is Tuesday and I'm already exhausted....and there are still 3 more weekdays left...ugh!
My son has AD/HD and ODD. I have been trying so hard to do the very best to give him the tools to help him live a less challenging life. We have gotten medication and therapy in place, but now we are faced with the difficult piece....self control. He was doing so well the last 3 weeks and then all of the sudden...yesterday and today happened. He had great days during school and I can only think that he held in his behavior and it sort of exploded. He had a major problem during after school care yesterday that continued through the evening until he was asleep. Today he had a great day at school and after school care, but was out of control again at home. We have a tally system in place and yesterday he lost 7 tallies in a matter of 4 hours. Today, he lost the rest of the tallies and I was forced to ground him tomorrow and Thursday, which takes away his den meeting for cub scouts. I sat him down tonight and asked what is going on because something had to have happened or changed for him to have such a dramatic change in his behavior. At first he said he didn't know and told me nothing has happened. Then he explained to me that some of the 5th grade kids in the after school care have been picking on him and being mean. I told him he needs to tell the staff and his response was that he does, but they say they will handle it and then do nothing. I told him I will talk to the staff about that part, but he also needs to toughen up and learn to just ignore these kids and/or blowing off what they have to say instead of reacting and escalating the situation.
My son is soooo extremely smart, but at the same time, he has a very hard time understanding the dynamics of social interaction with others and how his behavior truly impacts others. I watch him and wish so badly that I can make him understand....but all I can do is continue working with him and hope that it will click in his brain. It's rather challenging to keep up with it for me because the more energy I have to exhert with his behavior, the more fatigued I become. I am currently researching a few books I can buy to hopefully get a better understanding of the dynamics of his conditions and some tools that I can utilize at home to help him. I truly want this wonderful boy to succeed and conquer this!
As for my daughter....she unfortunately doesn't get as much attention becuase of her brother's behavior. I have been trying to make sure that she gets some special attention as well so she doesn't feel so left out. She also has been challenging me a bit more...not wanting to do her cleaning and throwing attitude here and there about certain things. She also has been taking advantage of bedtime and not going to bed when she is told to. However, the difference with her is that it only takes the loss of 1 tally before she steps back in line and does what she is supposed to. I do praise her for her good behavior and am working with her to let me deal with her brother and some of the things he does to drive her nuts (like take her juices that he knows are hers). She is having some challenges with her reading. She enjoys reading, but just like her mom, can find so many other things more interesting to do so she doesn't meet the goals she has set for herself. I'm hoping this will change so she can continue advancing her reading level. I also wish I could afford to get her into an art program outside of school because I want her to develop her talents.
For now, it's getting late and my head is less clogged now that I got some of my thoughts about parenting out of my head so tired & fatigue is setting in.....I bid you farewell for now.
Until next time...
My son has AD/HD and ODD. I have been trying so hard to do the very best to give him the tools to help him live a less challenging life. We have gotten medication and therapy in place, but now we are faced with the difficult piece....self control. He was doing so well the last 3 weeks and then all of the sudden...yesterday and today happened. He had great days during school and I can only think that he held in his behavior and it sort of exploded. He had a major problem during after school care yesterday that continued through the evening until he was asleep. Today he had a great day at school and after school care, but was out of control again at home. We have a tally system in place and yesterday he lost 7 tallies in a matter of 4 hours. Today, he lost the rest of the tallies and I was forced to ground him tomorrow and Thursday, which takes away his den meeting for cub scouts. I sat him down tonight and asked what is going on because something had to have happened or changed for him to have such a dramatic change in his behavior. At first he said he didn't know and told me nothing has happened. Then he explained to me that some of the 5th grade kids in the after school care have been picking on him and being mean. I told him he needs to tell the staff and his response was that he does, but they say they will handle it and then do nothing. I told him I will talk to the staff about that part, but he also needs to toughen up and learn to just ignore these kids and/or blowing off what they have to say instead of reacting and escalating the situation.
My son is soooo extremely smart, but at the same time, he has a very hard time understanding the dynamics of social interaction with others and how his behavior truly impacts others. I watch him and wish so badly that I can make him understand....but all I can do is continue working with him and hope that it will click in his brain. It's rather challenging to keep up with it for me because the more energy I have to exhert with his behavior, the more fatigued I become. I am currently researching a few books I can buy to hopefully get a better understanding of the dynamics of his conditions and some tools that I can utilize at home to help him. I truly want this wonderful boy to succeed and conquer this!
As for my daughter....she unfortunately doesn't get as much attention becuase of her brother's behavior. I have been trying to make sure that she gets some special attention as well so she doesn't feel so left out. She also has been challenging me a bit more...not wanting to do her cleaning and throwing attitude here and there about certain things. She also has been taking advantage of bedtime and not going to bed when she is told to. However, the difference with her is that it only takes the loss of 1 tally before she steps back in line and does what she is supposed to. I do praise her for her good behavior and am working with her to let me deal with her brother and some of the things he does to drive her nuts (like take her juices that he knows are hers). She is having some challenges with her reading. She enjoys reading, but just like her mom, can find so many other things more interesting to do so she doesn't meet the goals she has set for herself. I'm hoping this will change so she can continue advancing her reading level. I also wish I could afford to get her into an art program outside of school because I want her to develop her talents.
For now, it's getting late and my head is less clogged now that I got some of my thoughts about parenting out of my head so tired & fatigue is setting in.....I bid you farewell for now.
Until next time...
Thursday, February 26, 2009
A New Day...
Today I awoke refreshed and ready for a new day. A conversation that was had at work yesterday struck me. 3 of us were talking about the need for another person on our team, but in this economic downturn, now is not the time to hire someone. One person was concerned with mine and a co-worker's health due to taking on extra work. I pointed out that we both need our jobs and will be there regardless of health issues. This prompted a thought in my head (as many things do)....boy, am I lucky to have a job! Regardless of how tired it might make me, I'm so lucky to be able to wake up each weekday and get ready for work. I think this hit me hard because for the last two weeks I have been moaning and groaning about having to go to work and how tired it makes me.....well, that has changed and I will no longer be complaining. This conversation along with an email from the president of our company gave me an overwhelming sadness for all those people that have lost their jobs. The email we received yesterday morning made it more real that if things don't get better for our company, we will be forced to cut back on hours and/or wages. I do have an advantage because I work in the most important team, customer service. However, it still scares me because I can barely keep up with my bills and if that were to happen, what the heck would I do?! Now that I have acknowledged that, I will admit that I still have hope that we won't be forced to make those changes. Every time I think about it, I get an overwhelming calming sensation and a sense that things will be fine and this only encourages my hope.
I have been awake now for exactly 45 minutes....children and animals asleep and I'm sipping my coffee. I cherish my quiet time in the morning and in the late evenings. This quiet time allows me to ponder on many things. I have to giggle because my mind races all the time, but I do make an attempt to grab onto only a few thoughts during these quiet times so I can focus on them. Most recently, there have been 2 thoughts I have pondered more than the others. One is my health and the other is how precious life really is. The first...my health....those that know me, know that I am a very curious person. As I have gone to so many doctor appointments and ruled out a good chunk of things that could be causing my dizziness/unsteadiness and the pain/pressure in my ear....I'm still left with no answers and stuck in the unknown about it. I may seem a bit obsessed about it, but I still think I do have Meniere's disease. When I ask the Otoneurologist and the ENT why they say I don't have it, the only answer they have is that I don't have progressive hearing loss. Now, to me, this doesn't throw it out as an option completely. Set aside the fact that I don't have decible/volume progressive hearing loss and EVERYTHING else about Meniere's disease fits what I continue to describe as my challenges. Also, who is to say that I haven't had hearing loss?! They have done two hearing tests recently and the results have showed that my hearing is "normal" but on the low side. Plus, I HAVE HAD hearing loss...it has to do with the other part of hearing called discrimination.....the ability to clearly make out different sounds that different letters make. Even without background noise, I struggle...and then throw any amount of background noise and forget it! On top of that, I have been pondering what the Otoneurologist has said about the dizziness/unsteadiness...she says it is most likely migraine associated dizziness and I want to know how that is possible when the problem started 1.5 years before my first migraine. Yes, I have follow up appointments with these doctors, but how do you politely challenge your doctor?! LOL I forsee that being a very interesting experience....so I will have to post once those appointments are complete. Now, for the second item....life is truely prescious! I have known this for a very long time....ever since my mother passed away when I was 14, but it's very easy to forget how prescious life really is. On 2/6/09 a co-worker of mine was killed in a horrid car accident in the prime of his life. He was such a wonderful person and had only been married for 3 months, it's hard to understand why his life was cut so short. There is no understanding why it happened and I know that based on my previous experiences with loss. It's been several weeks now and I continue to think about him and am forever changed, especially when I'm driving. This has also been a very good reminder that each day is special and life is very precious.
For now, I must get ready for work.
Be sure to tell those you love how much you love them. Also, remember to smile at someone today! :)
Until next time....
I have been awake now for exactly 45 minutes....children and animals asleep and I'm sipping my coffee. I cherish my quiet time in the morning and in the late evenings. This quiet time allows me to ponder on many things. I have to giggle because my mind races all the time, but I do make an attempt to grab onto only a few thoughts during these quiet times so I can focus on them. Most recently, there have been 2 thoughts I have pondered more than the others. One is my health and the other is how precious life really is. The first...my health....those that know me, know that I am a very curious person. As I have gone to so many doctor appointments and ruled out a good chunk of things that could be causing my dizziness/unsteadiness and the pain/pressure in my ear....I'm still left with no answers and stuck in the unknown about it. I may seem a bit obsessed about it, but I still think I do have Meniere's disease. When I ask the Otoneurologist and the ENT why they say I don't have it, the only answer they have is that I don't have progressive hearing loss. Now, to me, this doesn't throw it out as an option completely. Set aside the fact that I don't have decible/volume progressive hearing loss and EVERYTHING else about Meniere's disease fits what I continue to describe as my challenges. Also, who is to say that I haven't had hearing loss?! They have done two hearing tests recently and the results have showed that my hearing is "normal" but on the low side. Plus, I HAVE HAD hearing loss...it has to do with the other part of hearing called discrimination.....the ability to clearly make out different sounds that different letters make. Even without background noise, I struggle...and then throw any amount of background noise and forget it! On top of that, I have been pondering what the Otoneurologist has said about the dizziness/unsteadiness...she says it is most likely migraine associated dizziness and I want to know how that is possible when the problem started 1.5 years before my first migraine. Yes, I have follow up appointments with these doctors, but how do you politely challenge your doctor?! LOL I forsee that being a very interesting experience....so I will have to post once those appointments are complete. Now, for the second item....life is truely prescious! I have known this for a very long time....ever since my mother passed away when I was 14, but it's very easy to forget how prescious life really is. On 2/6/09 a co-worker of mine was killed in a horrid car accident in the prime of his life. He was such a wonderful person and had only been married for 3 months, it's hard to understand why his life was cut so short. There is no understanding why it happened and I know that based on my previous experiences with loss. It's been several weeks now and I continue to think about him and am forever changed, especially when I'm driving. This has also been a very good reminder that each day is special and life is very precious.
For now, I must get ready for work.
Be sure to tell those you love how much you love them. Also, remember to smile at someone today! :)
Until next time....
Tuesday, February 24, 2009
Hope...
The dictionary defines hope as "to cherish a desire with anticipation" I have this beautiful ring that says HOPE and it sits on my left hand ring finger. I often look down at it and smile, thinking to myself "it's almost as if I am married to hope". I think that we as humans get caught up in the day to day crap and forget about so many things including hope. I told someone months ago that there is always hope and got a severly negative response. This made me realize that we need to remember that our thoughts are things. If we don't believe that there is hope, there will be no hope. If we do not have hope, what are we left with? To me, hope is such a powerful message all by itself. If we have hope, anything is possible. I have actually considered changing my name to Hope because it has touched my life so strongly and feel that making the change would help empower me to inspire others. I have a long list of desires and do cherish each of them with great anticipation that they will happen. I know that many times people think I've got my head in the clouds, but I've never let go of the idea that was told me as a child by my dear mom....anything is possible! Why shouldn't we as adults continue that belief? Everyone is dealt with a different set of cards and presented with various different choices in life. We make decisions with the information we have at the time and should always continue to reach for our pure desires. Through all of my experiences and challenges, I have, at times, felt hopeless. But even though I felt hopeless, I never let go of hope and I believe that helped me deal with the severity of many things I've experienced. Plus, when things start turning around for the good, you know that your hope wasn't worthless.
For those that have hope are those that have opened the door to dream and believe.
Until next time...
Monday, February 23, 2009
Ah, what a tangled web...
Isn't it amazing the various different layers and turns life has and takes?! I could spend an entire day just watching life happen in complete amazement. There is always something going on in my life, not necessarily drama, but just a lot going on. It's been several weeks since my last post and I cannot believe how time just slips away. I did go to see an ENT and had a rather interesting appointment. I took yet another hearing test so they had their own results and then got to meet with the doctor. I went to the appointment fully prepared...medical history I wrote, notes from the Otoneurologist (dizzy doctor as she calls herself), MRI images, the works. I do think he was impressed with this because he did take time to read through the medical history and notes I brought for him to keep. I was able to tell him the history, what was going on with my ear and expressed my frustration with no answers. He did respond in agreement with the Otoneurologist and doesn't think I have Meniere's Disease. What blew my mind was that he actually thought the pain/pressure in my ear could be related to clenching my teeth. He recommended aleve twice a day and a bite guard at night. I said I would try it, but after trying to get the bite guard with my FSA card with no luck....I had to wait until I had money and then ended up with strep & 2 ear infections and am just now to a point I think I can actually use it at night (even though there is only 2 weeks to my next appointment). I did, however, start the aleve twice per day as he suggested. This has helped a little bit. I also was able to see a dentist later in the week and brought up what the doctor mentioned and they checked my teeth and jaw....said there is NO sign of clenching or biting. The more I thought about what the ENT doctor said, the less it made sense....this pain/pressure has been happening off and on for the last 5 years. Surely if I had been clenching my teeth that long (even just at night) there would be some kind of wear on my teeth and jaw that a dentist could easily see. So this leaves me in a state of confusion (yet again) and I have every intention of discussing this when I see the ENT doctor again in a few weeks. Another thing that is frustrating with this ear thing....is that I do have hearing loss, but it's not decible/volume hearing loss. It's inability to make out sounds (known as discrimination) and throw background noise in....forget it! For some reason, it doesn't seem to be showing on the tests they do and it's also frustrating me. I feel that my thought process is logical....if I'm constantly needing people to repeat themselves and they have to do it a little louder, how in the heck do I not have hearing loss? Clearly, it may not be severe, but it doesn't seem like they care to help address that my hearing is NOT the same as it was and is not at a normal level for a 28 year old....think I will be brining that up at the next appointment as well. I would really just like a friggin answer so we know how to fix it....but the more I continue on this mission, the more I am convinced that is much more of a challenge that I originally thought. But, never-the-less, I will continue to have hope!
As for my son.....ah my sweet boy....we did get to see a psychologist. It was funny because within the first 10 minutes of the appointment, he asked if I'd ever been told I have AD/HD...I said yes, but not officially diagnosed and he just smiled. I was expecting an answer more like "well consider yourself diagnosed" LOL. It was a really good appointment, we were there for 1.5 hours. In the end, he decided to leave the dosage for the AD/HD meds the same, but add something called Tenex to help because my son does probably have a little OCD (obsessive compulsive disorder) and fully has ODD (oppositional defiant disorder). He said it would take several weeks for the medicine to really show any progress for the ODD and we will meet with him again in one month to review everything. It has been several weeks and while not all the defiant behavior is gone, it is certainly less and that is impressive. Instead of my son fighting 10 times about something, he will drop it after 2 times. I continue to hope that this works really really well. I now am going to start down a path of reading some recommended books and look at what tools he has been given at school and in therapy that I can reinforce or remind him of at home. I think that these 2 meds along with tools, will make things soooo much better for him :)
As for my health insurance.....UGH (still)....Yes, I am very thankful to have health insurance, but I don't feel it's right when it sorta screws the ones that need it most. I have had a battle or two with them and in the end, I'm the one that is screwed. They are "still working" on the stuff with my son's therapy and that looks like it "should" be okay. However, my prescription co-pay is stuck at the outrageous amount of $250/month. Now, this upset me greatly and prompted me to call and see if there was any other assistance out there for people like myself. Luckily, I received a call from the Chronic Disease Fund and qualified for assistance so my co-pay will only be $10/month....that lifted a load of bricks of my chest...phew! Even though I'm very relieved, it is clear to me that my new health insurance and pharmacy both suck and I'm just going to have to deal with it....I continue to have problems with them both, but am too tired to go into detail at this time.
Those are the main updates I wanted to share since my last post. However, that is not even close to what all has happened in the last two weeks. I will try to get back on and write more tomorrow as I want to make this a more frequent event, but for now, I must go to bed and get some rest.
Until next time....
As for my son.....ah my sweet boy....we did get to see a psychologist. It was funny because within the first 10 minutes of the appointment, he asked if I'd ever been told I have AD/HD...I said yes, but not officially diagnosed and he just smiled. I was expecting an answer more like "well consider yourself diagnosed" LOL. It was a really good appointment, we were there for 1.5 hours. In the end, he decided to leave the dosage for the AD/HD meds the same, but add something called Tenex to help because my son does probably have a little OCD (obsessive compulsive disorder) and fully has ODD (oppositional defiant disorder). He said it would take several weeks for the medicine to really show any progress for the ODD and we will meet with him again in one month to review everything. It has been several weeks and while not all the defiant behavior is gone, it is certainly less and that is impressive. Instead of my son fighting 10 times about something, he will drop it after 2 times. I continue to hope that this works really really well. I now am going to start down a path of reading some recommended books and look at what tools he has been given at school and in therapy that I can reinforce or remind him of at home. I think that these 2 meds along with tools, will make things soooo much better for him :)
As for my health insurance.....UGH (still)....Yes, I am very thankful to have health insurance, but I don't feel it's right when it sorta screws the ones that need it most. I have had a battle or two with them and in the end, I'm the one that is screwed. They are "still working" on the stuff with my son's therapy and that looks like it "should" be okay. However, my prescription co-pay is stuck at the outrageous amount of $250/month. Now, this upset me greatly and prompted me to call and see if there was any other assistance out there for people like myself. Luckily, I received a call from the Chronic Disease Fund and qualified for assistance so my co-pay will only be $10/month....that lifted a load of bricks of my chest...phew! Even though I'm very relieved, it is clear to me that my new health insurance and pharmacy both suck and I'm just going to have to deal with it....I continue to have problems with them both, but am too tired to go into detail at this time.
Those are the main updates I wanted to share since my last post. However, that is not even close to what all has happened in the last two weeks. I will try to get back on and write more tomorrow as I want to make this a more frequent event, but for now, I must go to bed and get some rest.
Until next time....
Tuesday, February 3, 2009
Life's little adventures...
As I sit here away from work for one day, I think to myself how amazing this world is. I have so many wonderful women in my life, a reliable job, 2 beyond beautiful children, ability to walk~see~hear, a powerful mind and life's little adventures. I've started putting together a business model in my head for my artwork along with the beginnings of a website. I will be going out to various locations to see what the art world is all about here in this gorgeous state of Colorado with the goal of better understanding out this will work for me going forward. That's a bit of an update, what I really want to blog about today is life's little adventures. The first month of 2009 is already gone and I had several adventures. One with my health, another with my son and another with my health insurance.
Adventure 1 ~ my health...I had a follow up appointment after some testing done regarding my dizziness. The doctor was cordial, but arrogant. She began by asking me lots of questions, which was fine because I hadn't seen her since 2004. Next, we talked about the testing and how everything looked "normal" and there is no progressive hearing loss which leads her to believe that I don't have Meniere's disease, but instead have Migraine associated dizziness that is also made worse by the MS. So, I agreed to try a new medicine that is "supposed" to reduce the dizziness, but we won't know for sure until I've been on it for 2 months. I really disagree with this doctor and do think that I have Meniere's disease based on my own research and conversations with others that have been medically diagnosed with it and do not have progressive hearing loss. However, I am excited to say that I'm going to see an ENT doctor today and hopefully we can make some progress toward my mission in figuring out exactly what I have.
Adventure 2 ~ my son...this child has AD/HD and most likely ODD (we are in the process of finding a psychiatrist for this part). Due to some issues with our new health insurance, he ran out of his meds in early January and was able to restart them on 1/25....this was a very good reminder to NEVER let this happen again. He's been back on his meds for almost 10 days now and I am starting to see relief once again. Since he is only 9 (as of today)....he doesn't understand that his behavior affects my health so much so I can't blame him for that, but it has been a challenging month causing many problems with my headaches and fatigue. I am sooooo thankful that he is back on his meds!
Adventure 3 ~ my health insurance....let me start by saying UGH! First, they didn't get our ID cards to us in a timely manner....we didn't even get them until 1/23. Then, there were problems with the prescription deductible and coverage for my son's therapy and most recently the co-pay for my medicine. I am so frustrated with this AND they are not responding to my inquiry quickly. I will be out of medication this Friday and will be very unhappy if this isn't resolved today or tomorrow. Even if they do the right thing, I will be reporting this company to the insurance commissioner of Colorado for misrepresentation of coverage and poor claims handling.
What I find most interesting is that I've managed through the last month....even though I haven't been in the best mood....I have made it through. I know that more of life's little adventures are in store throughout the rest of this year and continue to believe that this is going to be an awesome year full of new beginnings.
For now I must depart for a doctor's appointment (so yes, expect a blog about the findings :) )
Until next time....
~Hope~Dream~Believe~
Adventure 1 ~ my health...I had a follow up appointment after some testing done regarding my dizziness. The doctor was cordial, but arrogant. She began by asking me lots of questions, which was fine because I hadn't seen her since 2004. Next, we talked about the testing and how everything looked "normal" and there is no progressive hearing loss which leads her to believe that I don't have Meniere's disease, but instead have Migraine associated dizziness that is also made worse by the MS. So, I agreed to try a new medicine that is "supposed" to reduce the dizziness, but we won't know for sure until I've been on it for 2 months. I really disagree with this doctor and do think that I have Meniere's disease based on my own research and conversations with others that have been medically diagnosed with it and do not have progressive hearing loss. However, I am excited to say that I'm going to see an ENT doctor today and hopefully we can make some progress toward my mission in figuring out exactly what I have.
Adventure 2 ~ my son...this child has AD/HD and most likely ODD (we are in the process of finding a psychiatrist for this part). Due to some issues with our new health insurance, he ran out of his meds in early January and was able to restart them on 1/25....this was a very good reminder to NEVER let this happen again. He's been back on his meds for almost 10 days now and I am starting to see relief once again. Since he is only 9 (as of today)....he doesn't understand that his behavior affects my health so much so I can't blame him for that, but it has been a challenging month causing many problems with my headaches and fatigue. I am sooooo thankful that he is back on his meds!
Adventure 3 ~ my health insurance....let me start by saying UGH! First, they didn't get our ID cards to us in a timely manner....we didn't even get them until 1/23. Then, there were problems with the prescription deductible and coverage for my son's therapy and most recently the co-pay for my medicine. I am so frustrated with this AND they are not responding to my inquiry quickly. I will be out of medication this Friday and will be very unhappy if this isn't resolved today or tomorrow. Even if they do the right thing, I will be reporting this company to the insurance commissioner of Colorado for misrepresentation of coverage and poor claims handling.
What I find most interesting is that I've managed through the last month....even though I haven't been in the best mood....I have made it through. I know that more of life's little adventures are in store throughout the rest of this year and continue to believe that this is going to be an awesome year full of new beginnings.
For now I must depart for a doctor's appointment (so yes, expect a blog about the findings :) )
Until next time....
~Hope~Dream~Believe~
Sunday, January 18, 2009
New Beginnings....
I started 2009 by throwing away old stuff. I've been in my apartment for 2 years and it's amazing how things just pile up. It is now 18 days into the new year and I am still organzing my home. Not only is it nice to throw out old stuff....but it is freeing as well. 2009 is a year of new beginnings for my family....which consists of me, my two beautiful twins (1 boy and 1 girl that are almost nine) and our wonderful animals - Ricardo (9 yr old black cocker spaniel), Fancy (11 yr old Russian Blue kitty) and Lotus (3 yr old black kitty). We are starting down a path of independence and strength. 2008 was a very challenging year....I was diagnosed with Multiple Sclerosis, I had to cut ties with my father and all of the emotional stress that comes with both of those events. I also spent the last 3 months of the year trying to figure out another part of my health...whether I actually have Meniere's disease or not (and the search still continues). On January 1st, I made a prediction that 2009 would be a great year and I know I'm right. Everything that my family is doing falls in line with the theme I have named for this year - New Beginnings. I've even discovered a song that is so powerful I keep listening to it and get chills every time, it's called "Dead and Gone" by T.I. featuring Justin Timberlake. It is a hip hop song with an awesome beat and the chorus....well....let's just say....it's right on point with the fact that the old me is dead and gone and the new me will be alright! I am finding my way back home....to me...I've felt lost for many years and it's amazing what the last 6 months have taught me. I've grown so much and look forward to what's coming next. I am 28 years old and in my limited time on this earth, have been through so much....I will share my story with people when the opportunity presents itself and hopefully inspire their lives. I am committed to pursue my art and writing more this year in order to advance the path I am meant to walk. Every single day is a blessing and I think when we get caught up in the bustle of life, we forget to appreciate that.
I must say thank you to the many incredible women in my life (because without them, I have no idea what my life would be like) - Krystyna, June, Pam, Lisa, Schelli - you all are the best friends & best family I've ever had!
For now, I must head to bed....but watch for more posts because I love to write and share my story :)
Until next time....
I must say thank you to the many incredible women in my life (because without them, I have no idea what my life would be like) - Krystyna, June, Pam, Lisa, Schelli - you all are the best friends & best family I've ever had!
For now, I must head to bed....but watch for more posts because I love to write and share my story :)
Until next time....
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