I think that once you have been diagnosed with MS, you should be handed a field guide. One that tells you how to handle any given situation. For example, on page 33 it would tell you in situation where you stumble and fall in public say a quick one liner joke like "Thanks everyone for coming today, that's all folks"!!! On page 61 it would go over how to date with MS, like how to handle slurred speech during a date. For example, step one play coy and demure, answering with just yes and no answers. Step two, bat your eyes, listen intently and let him do all the talking etc....... On page 102, it would be on MS and fashion statements, such as how to coordinate your cane with your handbag.
I really would like MS to be a straight forward disease, following a consistent pattern. I think that is what is hardest about MS, it is so variable from person to person. I have heard so many stories about somebodies aunt uncle's cousin's friend who has MS and they are working, hiking, shopping, living it up just like normal. Well, I want someone to say that story about me, except it's not happening to me. Hmpfff!!! Today my body was not cooperating. Went to work in the morning yesterday just fine, but in the 7th hour of the day, I was so fatigued that my legs were not cooperating, my speech was slurred, and my vertigo worsened. Went back to work today even though I had not really improved much, and of course back home in 4 hours. Where is that Field Guide when you need it? Page 120, how to remain a productive person in society.
http://www.godvine.com/The-Hospital-Window-a-Truly-Inspirational-Short-Video-23.html
Wednesday, December 29, 2010
Monday, December 27, 2010
Holiday season
Well so far the holiday season has not turned out as I expected. I am having a little bit of a slump. Today is my birthday, doesn't really feel like it. Although my son made me quite a tasty breakfast with some yummy hot chocolate to boot. I am lucky to have such wonderful family, my children are turning out to be good hearted people as well.
I am walking better except when I start to get tired, but overall so much better than the beginning of December. I can walk for short distances without my cane, Yipee!!! Still having some balance issues. Having less vertigo, comes in waves; it's kind of weird. Sometimes when I lay down, the world starts to move around me. It's one of the oddest sensations that I have ever experienced.
I know at times I repeat myself, it's just that, honestly, I can't remember what I have said before. Short term memory problems at times. Although some how I have no trouble remembering the traumatic or the dramatic stuff that goes on in my life.
I hope that everyone has had or is having a wonderful holiday season. My gift to myself was skipping one dose of my shot. Felt like it was the greatest present to myself not to have to endure that shot for one night.
"I have always thought of Christmas time, when it has come round, as a good time; a kind, forgiving, charitable time; the only time I know of, in the long calendar of the year, when men and women seem by one consent to open their shut-up hearts freely, and to think of people below them as if they really were fellow passengers to the grave, and not another race of creatures bound on other journeys." ~Charles Dickens
I am walking better except when I start to get tired, but overall so much better than the beginning of December. I can walk for short distances without my cane, Yipee!!! Still having some balance issues. Having less vertigo, comes in waves; it's kind of weird. Sometimes when I lay down, the world starts to move around me. It's one of the oddest sensations that I have ever experienced.
I know at times I repeat myself, it's just that, honestly, I can't remember what I have said before. Short term memory problems at times. Although some how I have no trouble remembering the traumatic or the dramatic stuff that goes on in my life.
I hope that everyone has had or is having a wonderful holiday season. My gift to myself was skipping one dose of my shot. Felt like it was the greatest present to myself not to have to endure that shot for one night.
"I have always thought of Christmas time, when it has come round, as a good time; a kind, forgiving, charitable time; the only time I know of, in the long calendar of the year, when men and women seem by one consent to open their shut-up hearts freely, and to think of people below them as if they really were fellow passengers to the grave, and not another race of creatures bound on other journeys." ~Charles Dickens
Wednesday, December 22, 2010
Ready for Remission, are you out there?????
I am so tired, exhausted really. Last night I woke up at 1:30, couldn't fall back asleep until 5:45. I took a 2 hour nap today, yet I still feel so tired. Made Christmas cookies today with help from my mother-in-law, yet feel like I did another of those darn marathons. Every ache in my body has an ache. My legs feel wobbly. My right eye is not so good right now. I have a massive headache, but whose complaining.
I can hardly believe that Christmas is a couple of days away. This year has passed by so fast. I remember when I was younger, a year felt like it lasted forever. Now I look at my kids, wonder where all the years went. They are so big, teenagers, what happened to my babies? I wish I could slow down time a little. I am afraid if time goes to fast that I will become more disabled, less able to enjoy life. It is already hard enough as it is.
I find this blog to be very therapeutic. I can let go of some of my emotions through it. I try to be positive, but every once in a while I just feel drained. It is hard to be so upbeat when you're body feels so beat up. I am waiting for my break. A nice long one without any relapses. The one that supposed to come with RRMS. I am ready for my remission, a very long remission I hope. That's what I want for Christmas. I want a very very long period of remission, with the ability to work normal hours and enjoy my kids, husband, my life.
http://www.godvine.com/Celtic-Woman-Sings-a-Breathtaking-Version-of-You-Raise-Me-Up-111.html
I can hardly believe that Christmas is a couple of days away. This year has passed by so fast. I remember when I was younger, a year felt like it lasted forever. Now I look at my kids, wonder where all the years went. They are so big, teenagers, what happened to my babies? I wish I could slow down time a little. I am afraid if time goes to fast that I will become more disabled, less able to enjoy life. It is already hard enough as it is.
I find this blog to be very therapeutic. I can let go of some of my emotions through it. I try to be positive, but every once in a while I just feel drained. It is hard to be so upbeat when you're body feels so beat up. I am waiting for my break. A nice long one without any relapses. The one that supposed to come with RRMS. I am ready for my remission, a very long remission I hope. That's what I want for Christmas. I want a very very long period of remission, with the ability to work normal hours and enjoy my kids, husband, my life.
http://www.godvine.com/Celtic-Woman-Sings-a-Breathtaking-Version-of-You-Raise-Me-Up-111.html
Sunday, December 19, 2010
Insomnia
Insomnia. Boy do I have that. Not sure if it's related to MS or not. My husband says it is from "poor sleep hygiene". Meaning that I don't turn things off that stimulate my brain, such as this little netbook of mine. I attribute it to odd sensations that I get in my legs, sometimes in my arms too. It's hard to describe the sensation, other than tingling, creepy crawly feeling. Makes me want to keep my legs moving around.
The night before last, well closer to morning, I had these sensations in both my arms and legs. My husband woke up with me, as he couldn't sleep for other reasons. A few minutes after I was up, I think I may have had some sort of seizure. My body went rigid, for a few minutes, but the details are really fuzzy. My hubby witnessed it, it happened more than once, then I fell asleep for a long time waking up like 4 hours later. The rest of the day I felt kind of "off" and drowsy. It was very strange, a little scary. I have no idea if this is MS related or what. Either way it was pretty scary. I have not gone to the doctor with this, since I am not sure. Waiting too see if it happens again.
Anyway I have been up since 3 a.m, can't sleep. Odd sensations again. Hoping it will pass. Church today and I don' want to miss it. I have had to miss the last couple of weeks. I don't want to miss anymore. Church feels like my 2nd home, the people there are great. Makes me feel like I am home with people who love me.
I surely hope that I have not made to many spelling errors. Having some brain fog at the moment.
http://www.youtube.com/watch?v=Dn7pWm4i0ZU
The night before last, well closer to morning, I had these sensations in both my arms and legs. My husband woke up with me, as he couldn't sleep for other reasons. A few minutes after I was up, I think I may have had some sort of seizure. My body went rigid, for a few minutes, but the details are really fuzzy. My hubby witnessed it, it happened more than once, then I fell asleep for a long time waking up like 4 hours later. The rest of the day I felt kind of "off" and drowsy. It was very strange, a little scary. I have no idea if this is MS related or what. Either way it was pretty scary. I have not gone to the doctor with this, since I am not sure. Waiting too see if it happens again.
Anyway I have been up since 3 a.m, can't sleep. Odd sensations again. Hoping it will pass. Church today and I don' want to miss it. I have had to miss the last couple of weeks. I don't want to miss anymore. Church feels like my 2nd home, the people there are great. Makes me feel like I am home with people who love me.
I surely hope that I have not made to many spelling errors. Having some brain fog at the moment.
http://www.youtube.com/watch?v=Dn7pWm4i0ZU
Thursday, December 16, 2010
Snow
Snow!!! Does not happen very often where I am at. Such a beautiful thing, I am sure some would heartily disagree, especially those in heavy snow areas. One thing I like about the snow is it's lack of heat....Dumb statement maybe, but my body does not like heat. When I get over-heated by even one degree, my body kind of shuts down. My walking slows, I have a black spot in my right eye's sight of vision, and am overwhelmed by fatigue. So snow is very welcome at times, so long as I don't have to shovel it. Never will happen here as it usually disappears within an hour or two.
Today was a peppermint hot chocolate kind of day. It is starting to feel a lot more like Christmas. Not because of the snow, but because I feel so much better. We put up the tree. I painted some Christmas designs on our windows. Hung some lights in the windows too. I had the energy to do this, not all in one day, but over the course of a few days. I like when I am able to actively participate. Makes me wonder if I would have taken the steroids when I started going down hill in September would it have made a difference. It is very hard to tell when I am having a true relapse or whatever else could be. Steroids wreak havoc on your body, so it's is such a hard decision to make.
I can always tell when I feel better, because I sing. When I am overwhelmed with fatigue, I don't sing. It tires me out. Today I am singing.
Today was a peppermint hot chocolate kind of day. It is starting to feel a lot more like Christmas. Not because of the snow, but because I feel so much better. We put up the tree. I painted some Christmas designs on our windows. Hung some lights in the windows too. I had the energy to do this, not all in one day, but over the course of a few days. I like when I am able to actively participate. Makes me wonder if I would have taken the steroids when I started going down hill in September would it have made a difference. It is very hard to tell when I am having a true relapse or whatever else could be. Steroids wreak havoc on your body, so it's is such a hard decision to make.
I can always tell when I feel better, because I sing. When I am overwhelmed with fatigue, I don't sing. It tires me out. Today I am singing.
Tuesday, December 14, 2010
Back to work, Back to reality
Today was my first day back to work since being in the hospital. Tiring. That's the only way I can describe how my day was. I really am glad that I have such an understanding boss and co-workers. I feel as if I really matter to them. I am lucky in this aspect as I know their are other places that would have been less understanding. I try to do a full 8 hour shift, but at this point I am so tired. By the 6th hour I start stumbling, my walking becomes slower, my speech begins to slur and my right eye starts seeing everything double and blurred. Rather frustrating, but what can I do. What is really funny is that I forget how to speak Spanish, which I am fluent in normally. I sort of begin to stutter over my words. I think I expect too much of myself, after all it has only been a week since I was discharged from the hospital.
I need to learn to give myself a break, to let my body rest, heal. It's just that I get so bored. I like being busy, helping people. Makes me feel like I can contribute to society. It's hard for me to let go, even if it's just for a little while.
One of my dreams, hopes before this illness was to join a mission with Doctor's Without Borders. I wanted to help those people who were not able to help themselves due to poverty, politics or other obstacles beyond their control. That is not going to be a reality for me now, I have to come to terms with it. I just feel in my heart that I need to help people, I only wish I knew how I can help now.
http://www.doctorswithoutborders.org/
I need to learn to give myself a break, to let my body rest, heal. It's just that I get so bored. I like being busy, helping people. Makes me feel like I can contribute to society. It's hard for me to let go, even if it's just for a little while.
One of my dreams, hopes before this illness was to join a mission with Doctor's Without Borders. I wanted to help those people who were not able to help themselves due to poverty, politics or other obstacles beyond their control. That is not going to be a reality for me now, I have to come to terms with it. I just feel in my heart that I need to help people, I only wish I knew how I can help now.
http://www.doctorswithoutborders.org/
Sunday, December 12, 2010
Complications
So, I am walking a little better, crazy though because as soon as I get up from a laying position, I am still falling over. No fun. It has taken me until today (at least so far), to be able to walk around a little without the feeling of tunnel vision (from steroid withdrawal). Did you know that not walking around as well as the steroids along with MS leads to another complication????? Well I knew that but still didn't take any precautions so landed back in the ER last night AGAIN. I swear that they should just put in a revolving door for me, or maybe I should just call to make reservations.
Anyway, the little (huge) complication involves motility of the bowels. Not a pleasant topic or thought, but none the less, it is such an awful feeling, painful to boot as well. Got some IV fluids as I was dehydrated, Got some anti-nausea medicine that made me feel kinda goofy (no real change for those of you that know me), then home, pray for the world to start moving again.
When I worked on the floor as a nurse, I never understood the fixation that some people had with their bowels. There was always someone who would say that they haven't gone in a day or two. I was like what's the big deal. Well I suppose the big deal is that everyone's is the expert at their body chemistry, but some how medicine is still antiquated enough to think that they are the experts. Not everyone fits in a neat little box. If someone's norm is once or twice a day, then of course they would be worried. Due to MS, I have the opposite, days and days. THis time it has been a week, talk about uncomfortable.
The following link seemed appropriate :0)
Friday, December 10, 2010
Frustrating
I am wondering when it is that I will feel normal (or semi-normal). Today everything hurts, if it could be possible for my hair to hurt, then it does. I get so frustrated easily, at least right after a relapse. The reason is there is so much I want to do that I can't. THen on top of that I have to start back at square one. Walking is a challenge again, boy do I really want to walk. I want to walk for miles. I want to hike that mountain (more likely a mole hill).
I have a big fear on top of all this. I think they are under-estimating how sick I am. I am fearful that I may have a more progressive form of MS. That scares me to death. It would mean that these relapses (or whatever they are) are going to keep coming every few months and I will be more and more debilitated. I hope that this is not the case and that I am just having a bad couple of years, but still there is this lingering feeling that I have.
If I can't get better, what am I going to do? It has been already heart wrenching that I can't help people through my nursing any more. I LOVE being a nurse and I am good at it. I struggle that I am not able to take care of people anymore. I get to talk to them on the phone and offer suggestions and advice, but it's not the same. The moment that you start taking care of someone, when they realize you genuinely care about how they are doing, it changes you for the better. My heart belongs in this line of work, but now..............
I have a big fear on top of all this. I think they are under-estimating how sick I am. I am fearful that I may have a more progressive form of MS. That scares me to death. It would mean that these relapses (or whatever they are) are going to keep coming every few months and I will be more and more debilitated. I hope that this is not the case and that I am just having a bad couple of years, but still there is this lingering feeling that I have.
If I can't get better, what am I going to do? It has been already heart wrenching that I can't help people through my nursing any more. I LOVE being a nurse and I am good at it. I struggle that I am not able to take care of people anymore. I get to talk to them on the phone and offer suggestions and advice, but it's not the same. The moment that you start taking care of someone, when they realize you genuinely care about how they are doing, it changes you for the better. My heart belongs in this line of work, but now..............
Wednesday, December 8, 2010
Day After
Well it is the day after, and boy does it ever feel like the day after. Who ever came up with the idea of giving so much steroids without even a taper after should have to experience it for themselves. It feels awful. My mood is swinging from one way to the other. I feel like my heart is going to stop at any moment. My body does not know whether it is hot or cold. My face is as big as a puffer fish, not even as cute at this point. I feel like I am going to pass out the minute I stand up. I can't concentrate on any one thing for more than a moment at a time. My stomach feels like a hole has been burned through it. But other than that I feel just swell <<>
What am I whining about...........it could always be worse. It really could. But I think I am just a little entitled to wallow in self pity for a moment or two. This too shall pass, well get in the passing lane cause I don't want to be tailgated already. I only wish it would pass quickly, but it will drag itself out for about 2-3 days and that sucks big time.
This song explains it all, well except for the whole thing about meeting the girl and stuff. Actually just the refrain, but still its symbolic at this point. And besides I already cut and pasted it and I am too worn out to take it off :0)
http://www.youtube.com/watch?v=vQAfkYJdbrM
What am I whining about...........it could always be worse. It really could. But I think I am just a little entitled to wallow in self pity for a moment or two. This too shall pass, well get in the passing lane cause I don't want to be tailgated already. I only wish it would pass quickly, but it will drag itself out for about 2-3 days and that sucks big time.
This song explains it all, well except for the whole thing about meeting the girl and stuff. Actually just the refrain, but still its symbolic at this point. And besides I already cut and pasted it and I am too worn out to take it off :0)
http://www.youtube.com/watch?v=vQAfkYJdbrM
Tuesday, December 7, 2010
home today, Hopefully
Hopefully I will get to go home today. I just finished my last dose of steroids. I guess my heart rate went pretty low last night, but the neurologist does not seem to concerned. Just waiting for the final check in by the neurologist, then will be off to home.
I have such a wonderful husband. He makes sure that I am comfortable no matter where I am. The first night he brought my pillow and cozy blanket from home so I have a little bit of home with me. He brings me fresh jammies, along with things to entertain myself, like this nifty little netbook. I am truly blessed that the Lord has brought him into my life. I could not imagine my life without him, my kids, my parents, family, friends and first and foremost the good Lord. I surely would have been lost.
So even if I have to use the walker for a little while, Hate IT, but I know that it's just a short term thing. Today I am walking better than yesterday, yesterday I was walking better than the day before. It will come. I have a feeling that this is my last worst day for a long time to come. That would certainly be welcome.
I can hardly believe that this year is almost over. It seems like time just flies by so fast. One moment you are young with a life full of promise, then in the blink of an eye things have changed so fast that you don't know up from down. I've decided to stop blinking as frequently :0)
I liked this link, so I thought I would share it with you.
http://www.godvine.com/An-Unforgettable-Version-of-Amazing-Grace-Performed-by-Celtic-Woman-93.html
I have such a wonderful husband. He makes sure that I am comfortable no matter where I am. The first night he brought my pillow and cozy blanket from home so I have a little bit of home with me. He brings me fresh jammies, along with things to entertain myself, like this nifty little netbook. I am truly blessed that the Lord has brought him into my life. I could not imagine my life without him, my kids, my parents, family, friends and first and foremost the good Lord. I surely would have been lost.
So even if I have to use the walker for a little while, Hate IT, but I know that it's just a short term thing. Today I am walking better than yesterday, yesterday I was walking better than the day before. It will come. I have a feeling that this is my last worst day for a long time to come. That would certainly be welcome.
I can hardly believe that this year is almost over. It seems like time just flies by so fast. One moment you are young with a life full of promise, then in the blink of an eye things have changed so fast that you don't know up from down. I've decided to stop blinking as frequently :0)
I liked this link, so I thought I would share it with you.
http://www.godvine.com/An-Unforgettable-Version-of-Amazing-Grace-Performed-by-Celtic-Woman-93.html
Monday, December 6, 2010
back in the hospital BOO!!!!
Well I am back in the hospital. Today is day 2 of 3. I am getting 1000mg of solumedrol (stereoid) a day for 3 days. I have been having really bad bouts of vertigo, worsening each day to the point of feeling sick to my stomach. Then Tuesday I got this headache on my right side that just was aching constantly accompanied by shooting pains. Having some loss of vision in my right eye and my speech was slurred. My walking has declined, now they gave me a walker to use. All I have to say about that is BOO!!!!!
Hopefully I will recuperate fast, so I can go back to either the cane or nothing. I am opting for nothing but at this point am unsure if that is an unrealistic goal or not. But I will keep my faith, along with my hopes held high. It is what it is, not much use dwelling on the unknown at this point in time.
The good news is I did finish my final paper for school ahead of schedule. Not much to do sitting in a hospital bed, so I made the best of it. I turned it in already, didn't really proof it to well, so hopefully it makes sense. I am on a bit of medication so it may be comic relief for my instructor.
I saw this video on www.Godvine.com that brought tears of joy to my eyes so I will post that link below. Hope you enjoy it as much as I did.
http://www.godvine.com/Flash-Mob-Surprises-Everyone-by-Singing-Hallelujah-in-the-Food-Court-90.html
Hopefully I will recuperate fast, so I can go back to either the cane or nothing. I am opting for nothing but at this point am unsure if that is an unrealistic goal or not. But I will keep my faith, along with my hopes held high. It is what it is, not much use dwelling on the unknown at this point in time.
The good news is I did finish my final paper for school ahead of schedule. Not much to do sitting in a hospital bed, so I made the best of it. I turned it in already, didn't really proof it to well, so hopefully it makes sense. I am on a bit of medication so it may be comic relief for my instructor.
I saw this video on www.Godvine.com that brought tears of joy to my eyes so I will post that link below. Hope you enjoy it as much as I did.
http://www.godvine.com/Flash-Mob-Surprises-Everyone-by-Singing-Hallelujah-in-the-Food-Court-90.html
Thursday, December 2, 2010
blah blah blah blah
I am in the last week of this semester. Tired is the only way I can describe how I feel about it. It's funny how much energy it takes to write papers and do power points. Only one more paper to do, then a little break. Yay!!!
My legs were not cooperating with me today. My muscles ache like I ran a gazillion miles. I took a nice long nap to recuperate just from going to Costco. We were there for an hour and a half, but I feel like we walked all day long. I have a headache, my legs ache, and even my ache's ache :0)
And may I say, Thank God for leftovers. I don't like to waste food, so I put all my leftovers in tupperwares in the freezer. Days like today, I can take out a nice dinner from our freezer. Today was Steak fajitas. They were even better than the first day. Some days we have a potpourri of little meals when there is only a serving or two in the freezer. Sometimes on days that I feel terrific, I make an extra meal just to freeze. That way we can eat a home cooked meal on days like today without all the work. Although I have to say my hubby can cook pretty well, but he has so much on his plate already (no pun intended LOL).
Monday, November 29, 2010
freaky
SO I have been having some freaky symptoms since September, each day they get progressively worse. I don't know what they mean, although the neurologist told me that it may mean I have a lesion on my cerebellum. I thought just plan old vertigo was bad, I have had that off and on for a little while. However, since September, I even get vertigo that wakes me up from my sleep. I roll over to my right side and it's as if the world is spinning. I wake up feeling nauseated. Now it's progressed to the point of when I look up, or tilt my head to the right, I get this sick feeling in my stomach and the world is turning. This is a little frightening to me.
I can't just roll out of bed anymore either. Seems that my balance is at it's worse when I just wake up. At least when I fall, I fall back onto the bed. I may have already wrote about this, but my memory is just not that keen. It's funny because I used to remember even the tiniest of detail, as well as very intelligent. Now I can't seem to finish a conversation without forgetting what the topic was or without being able to articulate what is in my head.
The little electricity thing is back in full force as well. Whenever I move my head up or down, side to side, I get the feeling of what I can only describe as static electricity across my shoulders and down my spine. Very bizarre sensation. L'Hermittes sign is what they call it.
http://www.youtube.com/watch?v=xFNUvJyXCvY&playnext=1&list=PL7444A84C59B08D0E&index=26
I can't just roll out of bed anymore either. Seems that my balance is at it's worse when I just wake up. At least when I fall, I fall back onto the bed. I may have already wrote about this, but my memory is just not that keen. It's funny because I used to remember even the tiniest of detail, as well as very intelligent. Now I can't seem to finish a conversation without forgetting what the topic was or without being able to articulate what is in my head.
The little electricity thing is back in full force as well. Whenever I move my head up or down, side to side, I get the feeling of what I can only describe as static electricity across my shoulders and down my spine. Very bizarre sensation. L'Hermittes sign is what they call it.
http://www.youtube.com/watch?v=xFNUvJyXCvY&playnext=1&list=PL7444A84C59B08D0E&index=26
Friday, November 26, 2010
black friday
Today was Black Friday, day after Thanksgiving with lots of sales in stores. I find that this day is not a day I want to be out and about. It is a very sad state of affairs when this becomes a highlight of Christmas. People now are missing the whole point of the celebration of Christ's birth. It shows in the materialism, but it shows so much more in the way people treat each other. Where is the kindness to one another? It becomes about battling over this years latest gadget. I don't understand. It is obscene how much people have and still want for more. It makes me feel sad that there are people struggling for the simple necessities in life. There was a box for donations to the local rescue mission near one of the stores. The sign on it was for new or gently used clothes, toiletries, and blankets. There must have been a thousand people in the mall, I looked in the box and it was empty. I tried to teach my teenage daughter a lesson on giving unto others. We bought some items and placed them in that box. I reminded her that we are blessed with what we have, it is our duty to help others. It is also important that we do so without boasting or expecting anything in return. As a matter of fact, my heart fills with the love of Christ when I give what I can, that in itself is wonderful. What I am posting is not for acknowledgement but to encourage others to give what they can. It doesn't have to be material things, we can give of ourselves.
What does this post have to do with MS you are probably asking yourself. I am not sure, other than I am grateful for what I have. My needs are all taken care of by Christ the Lord, my family and my friends. I don't need anything more than the basics. I walked so well today, for that I am grateful.
35 For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.' 37 "Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you?39 When did we see you sick or in prison and go to visit you?' 40 "The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me. Matthew 25:35-40
What does this post have to do with MS you are probably asking yourself. I am not sure, other than I am grateful for what I have. My needs are all taken care of by Christ the Lord, my family and my friends. I don't need anything more than the basics. I walked so well today, for that I am grateful.
35 For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.' 37 "Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you?39 When did we see you sick or in prison and go to visit you?' 40 "The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me. Matthew 25:35-40
Tuesday, November 23, 2010
Cane not candy,
Okay, I knew that there were walkers with seats, but my wonderful hubby found a cane with a seat. It's not really functional for everyday use, but when we go out it comes handy. It's a little on the heavy side, I need to figure out how to make it not slippery on the bottom. There is no grip. Tennis ball maybe????? It is nice though when we walk a lot, I no longer have to search for a bench or a seat, I have one with me already.
Today I walked a lot, I wasn't even that tired. Granted I did take an hour and half nap after, but that is neither here no there. It was great. I really enjoy walking, I pray that this is the worse I'll ever get. I can walk better and better every day. If it wasn't for that darn balance problem, I probably could even do it without a cane.
My next challenge are those daunting, horrifying, awesome step up from the curbs.......It's like I have to think ready, set, go and propel myself up the curb. But so far I have defeated that dastardly curb, I refuse to let it concur me.
http://www.youtube.com/watch?v=iPUmE-tne5U&playnext=1&list=PL058B39C665D870EF&index=24
Today I walked a lot, I wasn't even that tired. Granted I did take an hour and half nap after, but that is neither here no there. It was great. I really enjoy walking, I pray that this is the worse I'll ever get. I can walk better and better every day. If it wasn't for that darn balance problem, I probably could even do it without a cane.
My next challenge are those daunting, horrifying, awesome step up from the curbs.......It's like I have to think ready, set, go and propel myself up the curb. But so far I have defeated that dastardly curb, I refuse to let it concur me.
http://www.youtube.com/watch?v=iPUmE-tne5U&playnext=1&list=PL058B39C665D870EF&index=24
Friday, November 19, 2010
Thank God for little blessings
Today was a good day. I actually was able to work my full shift. I am grateful for that, although I have to tell you I am so very tired. A welcomed gift awaited me at home though. One of the ladies from my church brought over a meatloaf, scalloped corn and homemade bread for us. It was delicious and allowed my husband to take a little break.
I carry a lot of guilt around me when it comes to my husband. He is wonderful and loves me very much. I feel as though he got the raw end of the deal. He works so hard and I appreciate everything he does for me. To be honest I don't know how he does it. He works full time, then spends his free time helping out one of the elderly men in our church, helps me out, does work around the house. I am truly blessed to have him in my life. I try to tell him Thank You for everything he does, but I can't truly relay in words my gratitude.
We went to the grocery store yesterday. Let me tell you, there was a time that I would spend a whole day at stores and would come home still as rested as when I left. We spent one and half hours out yesterday and you would have thought that I ran a 20K marathon, plus a 20K bike ride, plus hiked a fourteener. That is how exhausted I was. It is so weird that our bodies can change so drastically over a course of a few years. I am by no means old, not a spring chicken either, but MS makes you feel like you are beyond a hundred years old when it comes to energy (or lack there of).
This song I dedicate to my husband, whom I love with all my heart and am grateful that the good Lord brought him into my life.
http://www.youtube.com/watch?v=-AtaZ_NU_tU
I carry a lot of guilt around me when it comes to my husband. He is wonderful and loves me very much. I feel as though he got the raw end of the deal. He works so hard and I appreciate everything he does for me. To be honest I don't know how he does it. He works full time, then spends his free time helping out one of the elderly men in our church, helps me out, does work around the house. I am truly blessed to have him in my life. I try to tell him Thank You for everything he does, but I can't truly relay in words my gratitude.
We went to the grocery store yesterday. Let me tell you, there was a time that I would spend a whole day at stores and would come home still as rested as when I left. We spent one and half hours out yesterday and you would have thought that I ran a 20K marathon, plus a 20K bike ride, plus hiked a fourteener. That is how exhausted I was. It is so weird that our bodies can change so drastically over a course of a few years. I am by no means old, not a spring chicken either, but MS makes you feel like you are beyond a hundred years old when it comes to energy (or lack there of).
This song I dedicate to my husband, whom I love with all my heart and am grateful that the good Lord brought him into my life.
http://www.youtube.com/watch?v=-AtaZ_NU_tU
Wednesday, November 17, 2010
AFO, not UFO :0)
So the neurology appointment went better than expected, still hate going to the doctors. All the same neuro exams. Still can't walk on my tip toes, heels or tandem without losing balance. Guess I better not ever get pulled over by the police, would fail that exam even though I am not a drinker :0)
So it seems I am going to get an AFO or something like that. It's a little splint like device for my left foot. I have foot drop and apparently it's never going to go away. This AFO will support my foot up so I don't trip on it. What fun, (sarcasm). I already look pretty stylish with my cane, but now with this beautiful contraption I will be such a fashionista.
I am hoping not to be using my cane for much longer. I don't need it in the house, but when I go out I still lose my balance. It's weird. Or maybe I'm weird. Probably the later, but that's okay, I've come to terms with it.
So it seems I am going to get an AFO or something like that. It's a little splint like device for my left foot. I have foot drop and apparently it's never going to go away. This AFO will support my foot up so I don't trip on it. What fun, (sarcasm). I already look pretty stylish with my cane, but now with this beautiful contraption I will be such a fashionista.
I am hoping not to be using my cane for much longer. I don't need it in the house, but when I go out I still lose my balance. It's weird. Or maybe I'm weird. Probably the later, but that's okay, I've come to terms with it.
Monday, November 15, 2010
Doctors
Today I am going to see the neurologist, not my MS doctor. It's a little stressful for me to go to all these different appointments. I actually hate going to the doctors, as often as I have to go. I hate being poked and prodded. I hate being on display. That's what it feels like. With this neurology clinic, I never see the same doctor. I usually see either a medical student or a resident, and then they bring in the attending doctor. I have to tell my story all over again. Why do I go to them then? Because I can't afford my medications any other way. Utilizing this clinic allows me to afford my Copaxone. With just my health insurance, my copay is $250 a month, but through this clinic my copay is only $8.
I am struggling today. I am sick of taking medications, so many for different things that all relate to MS. A couple for other diagnosis. I can't stand taking medications, especially that shot. I know that I can't control the course of this illness, but I take the medications so that hopefully it will slow down my progression. I want to be able to participate in life, not sitting on my butt, but actively participating.
I am struggling today. I am sick of taking medications, so many for different things that all relate to MS. A couple for other diagnosis. I can't stand taking medications, especially that shot. I know that I can't control the course of this illness, but I take the medications so that hopefully it will slow down my progression. I want to be able to participate in life, not sitting on my butt, but actively participating.
Thursday, November 11, 2010
If I only had a brain
I spent the day today doing a research assignment for my leadership class. I find myself enjoying school work. It makes me feel as if I am preparing to beat MS by proving that I can still use my brain.
For the research study for MS I am participating in, I have to go through a couple different cognitive exams. An example is remember a list of words, then repeating the words periodically throughout the exam. Another one is what we have called monotone man. He reads a set of numbers, with in 3 seconds you have to add. The catch is the next number he says has to be added not to the sum of the previous, but rather to the 2nd number in the previous equations. So in essence you don't remember the sum, but the number of the equation. It goes pretty fast, non stop for a few minutes. After that you do the same thing but with a 2 sec interval between number. 3 seconds no problem, 2 seconds adds a little roadblock at times. The weird thing is that I am told that I have exceptional cognitive skills, but what they don't know is I have very different cognitive skills now.
I find myself typing now with all these misspellings that never would have appeared before. I usually catch grammatical errors very efficiently. But now, I will post something without even noticing what I misspelled or utilizing a word out of context. My brain doesn't process the little things like it used to. I am hoping by having to do some intellectual thinking with school, maybe I can regain some of these skills back.
"Anyone who has never made a mistake has never tried anything new."~Albert Einstein
Wednesday, November 10, 2010
Humility
Life is funny. Not ha-ha funny, but strange funny. It never ceases to surprise me that when I begin to throw myself a pity party, I find myself often humbled. There are people in this world who are suffering far worse than I can even fathom and here I am woe is me.
I am lucky. I have a good life. A loving family. I have a job working with good people. I have good friends, not just any friends, but truly good people who support and care about me. I have my faith, my Lord. I am by no means wealthy in material possessions, but when it comes to what matters, I have enough.
MS sucks, don't get me wrong, but I am not dying. I can't let myself become THAT person. I won't become that person. Life doesn't end because of this illness. I try to remember that when I can't stand on my own two feet. I try to remember that when I stumble. I try to remember that when I am house-bound because I am so dizzy I can't drive. I try to remember that when my left foot won't lift off the ground like it's supposed to or when my vision fails in my right eye. This is not the end. Nor is it a beginning. This is a chapter. A chapter of my life, a deviation in the journey. An opportunity.
I for some reason and having trouble linking, so I encourage you to copy and paste the following link. It's a song by Norah Jones called Humble Me.
Monday, November 8, 2010
Driving Me Crazy
I drove for the first time in almost 2 months today. It felt good to have a little more of my independence. I have not been able to drive because I have been so dizzy. Tomorrow I have to work, but I will have to take the bus. I can drive myself there but by the end of the day my symptoms are so much worse.
It is very hard when you are housebound and have to rely on someone else to drive you around. I can't imagine those that are housebound permanently. I hope and pray that I never have this happen to me on a permanent basis. When my kids are at school, my husband at work, and I am housebound, the days are so lonely. I hope that I am never in that place again.
All this is incentive to keep doing those daily shots. Hoping that I am getting the true research medicine and not the placebo. Anything to not be in that place again.
The last couple of days I have even been able to go to the stores again. My walking has improved so much, sometimes , for short distances, I can even go without my trusty sidekick, the cane. Woo-Hoo.
The most wasted of all days is one without laughter." ~~~E.E. Cummings
Sunday, November 7, 2010
Today
I spent the day writing a paper for school. It seems like such a weird thing to do in the midst of a disabling illness, going back to school I mean. I am an RN already, but no bachelors degree. What is the point? Well in my convoluted way of thinking it is to secure my future. I have come to terms with the fact that I will never be a floor nurse again, so I am in dire need of some future security. My goal is to get my Masters degree in Health Education, so I can teach. There are a lot of programs with online courses these days. If I can become an instructor I will be actively involved in the nursing field still.
Anyway, back to the paper. I was able to finish writing it today. I wish that I had this self-discipline before I became sick. I have been doing things ahead of schedule, just in case. It's that unpredictability thing again. I never know when or where. Sometimes I feel like I spend my days preparing for the floor to fall out from beneath my feet.
The trouble with always trying to preserve the health of the body is that it is so difficult to do without destroying the health of the mind. ~G.K. Chesterton
Friday, November 5, 2010
Unpredictable
I think that sometimes I have a hard time wrapping my finger around this disease, because I am pretty much a straight forward person. MS is not straight forward is it? Some people experience one exacerbation and may not have another one for many years. Others do one big face plant down hill. It's rather curious if you think about. What is it about our genetic make-up that leads on person to be more resilient than another?
Is it lack of will? Maybe, but I have seen people fight tooth and nail, but still don't recover from whatever their burden is. Although as a nurse I have seen what lack of will can do to a variety of people. Sometimes it can mean the difference of surviving or not.
I like to think that my will is strong, my faith in the good Lord is strong too. Everyday brings new opportunities, new challenges, but I know deep down in my heart, that I will overcome, to what degree we shall see, but never the less, I will.
My philosophy has always been, when I have a bad day, "If this is the worst thing that happens to me today, then it will be a good day." I try to instill that into my kids also, for the little unimportant things life brings us. On my worst days, I get so blinded, that it's hard to find my way out, but eventually life is still there and I need to embrace it.
Is it lack of will? Maybe, but I have seen people fight tooth and nail, but still don't recover from whatever their burden is. Although as a nurse I have seen what lack of will can do to a variety of people. Sometimes it can mean the difference of surviving or not.
I like to think that my will is strong, my faith in the good Lord is strong too. Everyday brings new opportunities, new challenges, but I know deep down in my heart, that I will overcome, to what degree we shall see, but never the less, I will.
My philosophy has always been, when I have a bad day, "If this is the worst thing that happens to me today, then it will be a good day." I try to instill that into my kids also, for the little unimportant things life brings us. On my worst days, I get so blinded, that it's hard to find my way out, but eventually life is still there and I need to embrace it.
Thursday, November 4, 2010
energizer bunny wherfore art thou
Ever since I have lost the ability to run, I want to run. It's funny how the things that seemed so normal before are now a part of a wish and maybe a little bit of envy. I long to ride my bike like I did before.
A little before I started have balance and muscle weakness, my husband gave me a nice bike for Valentines day 2008. Now the perception is that most girls long for jewelry , flowers etc... on this day, but he knew just what to get me. He wanted me to spend time with him doing an activity that he loved. It was absolutely the best Valentines gift that I have ever received. I knew shortly after that I was going to have a big problem.
We would go on these nice bike rides, but it seemed to me that my legs would quit working, especially in the heat. It was like lead weights were applied to each leg.
So I have a goal, one of many. I want to ride a bike again. If it means that I have to take this awful shot once a day then so be it. I don't want to sit back to watch life pass me by. I want to be in the midst of it, enjoying everything that I can. This means I have to fight, overcome. Where are the boxing gloves cause I am ready.
Life is either a daring adventure or nothing.~Helen Keller
A little before I started have balance and muscle weakness, my husband gave me a nice bike for Valentines day 2008. Now the perception is that most girls long for jewelry , flowers etc... on this day, but he knew just what to get me. He wanted me to spend time with him doing an activity that he loved. It was absolutely the best Valentines gift that I have ever received. I knew shortly after that I was going to have a big problem.
We would go on these nice bike rides, but it seemed to me that my legs would quit working, especially in the heat. It was like lead weights were applied to each leg.
So I have a goal, one of many. I want to ride a bike again. If it means that I have to take this awful shot once a day then so be it. I don't want to sit back to watch life pass me by. I want to be in the midst of it, enjoying everything that I can. This means I have to fight, overcome. Where are the boxing gloves cause I am ready.
Life is either a daring adventure or nothing.~Helen Keller
Wednesday, November 3, 2010
??????
Today, my daughter comes home from school saying that she was really tired and she doesn't know why. No big deal right???? Then she tells me that her legs are heavy, she has been very clumsy and that she kept falling down today. Alarm bells are going off in my head. She has a neuro appointment in January, I hope that I didn't pass this on to her. She is so young and I don't wish this on my worst enemy, let alone my beautiful daughter. I pray to the good Lord that she doesn't have this problem.
Been a little over a month since started back on the Copaxone. Still taking "research drug or placebo".
I felt better the last couple days, getting a little more energy, my balance is better, my walking is better, my talking is better. MS is such a weird disease. Literally, one minute your good, then the next minute you are not. That's why it's so important not to make hasty decisions in the midst of a relapse. It's hard to predict where you will be at the end. However, it is important to plan.
God Bless.
Been a little over a month since started back on the Copaxone. Still taking "research drug or placebo".
I felt better the last couple days, getting a little more energy, my balance is better, my walking is better, my talking is better. MS is such a weird disease. Literally, one minute your good, then the next minute you are not. That's why it's so important not to make hasty decisions in the midst of a relapse. It's hard to predict where you will be at the end. However, it is important to plan.
God Bless.
Sunday, October 17, 2010
about time
Welp, it's been a while. No excuse, probably sheer laziness. Been off Copaxone, then on Rebiff, now back to Copaxone. Hmmmm. The good thing is that either way I am still living with MS. or wait, is that the bad thing.
Started back to school so I can turn my RN into a BSN then eventually a MSN. Since I can't really work the floor anymore I will subcumb to that old addage "those who can't do, teach". I don't know if it's a good plan or not, but it's worth a try.
I started a research study, felt like being a guinea pig for a while. Still having to take copaxone but now with an added pill (placebo or not). It's a blinded study so I don't know if I am actually getting the study medication or not. I get a cognitive exam every 3 months or so. I am hoping to not have a decline in intelligence, but if you notice misspellings don't assume it's just a mistake :)
Every day I decide that tomorrow is going to be a new day and a new start. My diet is going to be better. My walking is going to be better. My energy is going to be whoop whoop. And every night I think about how I blew it for that day. But the good thing is there is always tomorrow.
Started back to school so I can turn my RN into a BSN then eventually a MSN. Since I can't really work the floor anymore I will subcumb to that old addage "those who can't do, teach". I don't know if it's a good plan or not, but it's worth a try.
I started a research study, felt like being a guinea pig for a while. Still having to take copaxone but now with an added pill (placebo or not). It's a blinded study so I don't know if I am actually getting the study medication or not. I get a cognitive exam every 3 months or so. I am hoping to not have a decline in intelligence, but if you notice misspellings don't assume it's just a mistake :)
Every day I decide that tomorrow is going to be a new day and a new start. My diet is going to be better. My walking is going to be better. My energy is going to be whoop whoop. And every night I think about how I blew it for that day. But the good thing is there is always tomorrow.
Wednesday, March 10, 2010
MS awareness month
THis is from MSassociation.org. FYI, I am already aware of MS :0)
March is Multiple Sclerosis Awareness Month
The Multiple Sclerosis Association of America (MSAA) encourages everyone to take time this March to learn about multiple sclerosis (MS) and discover all of the programs and services MSAA offers to everyone affected by MS.
- Read MSAA's award-winning publications, including two new publications: Daddy's Story , a n introduction for younger children to learn about a parent's MS; and Primary Progressive Multiple Sclerosis -- What You Need to Know , a comprehensive guide for the PPMS community.
- Visit the online gallery for MSAA's Art Contest for People Living with Multiple Sclerosis .
- Register for MSAA's Walking and MS webcast .
- Explore MSAA's website and read about the programs and services MSAA offers the MS community.
- View one of MSAA's educational videos in the MSi Video Library .
- Attend one of MSAA's educational events. Check the calendar for an event in your area.
Tuesday, March 9, 2010
"Just the Facts" from NMSS
This is from the National MS societies brochure called "Just the Facts"
What are the typical symptoms of MS?
Symptoms of MS are unpredictable; they can vary from person to person, and from time to time in the same person. For example: One person may experience abnormal fatigue and episodes of numbness and tingling. Another could have loss of balance and muscle coordination making walking difficult. Still another could have slurred speech, tremors, stiffness and bladder problems. Sometimes major symptoms disappear completely, and the person regains lost functions. In severe MS, people have symptoms on a permanent basis including partial or complete paralysis, and difficulties with vision, cognition, speech and elimination.
What causes the symptoms?
MS symptoms result when an immune system attack affects myelin, the protective insulation surrounding nerve fibers of the central nervous system (the brain and spinal cord). Myelin is destroyed and replaced by scars of hardened“sclerotic” tissue. Some underlying nerve fibers are permanently severed. The damage appears in multiple places within the central nervous system. Myelin is often compared to insulating material around an electrical wire; loss of myelin interferes with the transmission of nerve signals.
I have pretty much all the symptoms listed above at one time ,except for paralysis, or another and sometimes all at once. As I said in the past, the most debilitating for me is the extreme fatigue and walking difficulties.
Saturday, March 6, 2010
just feeling sorry for myself
I am unsure if anyone really reads my post or not, it really makes no difference either way. I find it great therapy to write my thoughts down once in a while. Although initially this post was to be inspirational, lately I have found it hard to stay that way.
I am angry today. I am mad at myself for letting this disease get the best of me lately. I am angry that I have this illness. I want to be who I was before. I don't know who I am now.
Since I have been diagnosed, it was my philosophy to not let this disease define who I am. Well, that has been hard to do lately. I try to do all the "right" things and I still end up taking 2 steps backwards.
I want to feel well and not sick ALL the time. I don't understand how some others have longer periods of well time and I don't even seem to get a week. I want a break. Please give me a break. A period of time when I feel well. I want to be able to do things and not have to pay for it a day or two later.
I need some inspiration. I need some hope. I need some healing physically and mentally. I don't like feeling this way. I am usually the one helping others, but right now I need some.
When we put our cares in His hands, He puts His peace in our hearts. ~Author Unknown
I am angry today. I am mad at myself for letting this disease get the best of me lately. I am angry that I have this illness. I want to be who I was before. I don't know who I am now.
Since I have been diagnosed, it was my philosophy to not let this disease define who I am. Well, that has been hard to do lately. I try to do all the "right" things and I still end up taking 2 steps backwards.
I want to feel well and not sick ALL the time. I don't understand how some others have longer periods of well time and I don't even seem to get a week. I want a break. Please give me a break. A period of time when I feel well. I want to be able to do things and not have to pay for it a day or two later.
I need some inspiration. I need some hope. I need some healing physically and mentally. I don't like feeling this way. I am usually the one helping others, but right now I need some.
When we put our cares in His hands, He puts His peace in our hearts. ~Author Unknown
Tuesday, March 2, 2010
new medication
Went to my MS clinic yesterday to figure out why I have never recovered and come back to a baseline. There is no explanation other than the medication that I am currently on is not the right one for me. The plan is to start a new medication called Rebif. It is still a shot but not daily like this current one. This one I will take 3 times a week.
I am kind of nervous about it. When I start reading the side effect, it kind of makes me nervous. They will have to monitor my liver enzymes, my white blood cells and my thyroid function. Apparently it can give you liver damage and I already am living with that from all those years of taking a certain birth control pill that we all see warnings for on t.v. I also already have thyroid problems. But do the benefits out weigh the risks? I sure hope so.
I will be going for another MRI in a couple of weeks to monitor for advancement of the disease. MRI's are not as bad as I thought they would be, but I still hate going in there. It never fails, once I am in the machine I feel the need to go to the bathroom or my arms start jerking from the vibration. And not to mention the obnoxious noise. They put earphones on you and ask you what kind of music you want to listen to, the last time they forgot to change the music and I ended up listening to some obnoxious punk or something music. Anyway, the music never drowns out the noise and I will hear that loud hummmm, clicking sound all day long in my head.
I will cause you to walk in the straight way...I will open to you the gates of righteousness..
For whoever finds Me, finds life - Psalm 118:19; Proverbs. 8: 35-6
I am kind of nervous about it. When I start reading the side effect, it kind of makes me nervous. They will have to monitor my liver enzymes, my white blood cells and my thyroid function. Apparently it can give you liver damage and I already am living with that from all those years of taking a certain birth control pill that we all see warnings for on t.v. I also already have thyroid problems. But do the benefits out weigh the risks? I sure hope so.
I will be going for another MRI in a couple of weeks to monitor for advancement of the disease. MRI's are not as bad as I thought they would be, but I still hate going in there. It never fails, once I am in the machine I feel the need to go to the bathroom or my arms start jerking from the vibration. And not to mention the obnoxious noise. They put earphones on you and ask you what kind of music you want to listen to, the last time they forgot to change the music and I ended up listening to some obnoxious punk or something music. Anyway, the music never drowns out the noise and I will hear that loud hummmm, clicking sound all day long in my head.
I will cause you to walk in the straight way...I will open to you the gates of righteousness..
For whoever finds Me, finds life - Psalm 118:19; Proverbs. 8: 35-6
Saturday, February 27, 2010
weebles wobble but they don't fall down
Went to work today. Another exciting day, not really. I miss the exciting days. Helped to triage a patient and had to walked through step by step through the computerized charting because it has been so long since actually doing any kind of patient interaction like that. Was only momentary though and back in the office making follow up calls.
I find it hard to focus. I want to be out on that floor but I know that I probably never will get to be. Makes me sad because taking care of people makes me so happy. I need to take care of me now.
Today I still used the cane, but I felt like maybe I don't need it anymore. The problem is the longer I am up walking, the more I really need it. I get clumsier and off balance as the day progresses, so the dilema is do I use the cane all the time or carry it around until I need it later in the day (and how dumb would it look to carry a cane but not use it) (not that perception matters, but it kind of does to me).
I wonder what it is about this disease that makes day to day so different. Some days I am at a higher level of functioning than others. It's so bizarre. I have never been quite normal since April (I am sure this has been a repetitive theme in my blogs), but one day I am walking with barely any problems and the next day I feel like I have those big old clown shoes on and stumbling all over the place.
Maybe I should wear a shirt that says If you pull me over for a sobriety test, I will fail, not because I've been drinking, but because I am MSing. Hope to never get caught at a checkpoint. I will surely fail their field test. The whole irony of that situation would be that I don't drink (very rare).
Anyway, just sort of rambling on. No real though process here. Having issues with that today too. I have noticed that my spelling is awful lately. I can't make a complete sentence. (except that one) My coordination for typing is way off.
This has really turned out to be a diary more than anything. I am sure that no one really reads these but they help me in the end. I have to tell you that looking up these end of the post quotes has been helpful too, inspiring.
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ...Mother Theresa
I find it hard to focus. I want to be out on that floor but I know that I probably never will get to be. Makes me sad because taking care of people makes me so happy. I need to take care of me now.
Today I still used the cane, but I felt like maybe I don't need it anymore. The problem is the longer I am up walking, the more I really need it. I get clumsier and off balance as the day progresses, so the dilema is do I use the cane all the time or carry it around until I need it later in the day (and how dumb would it look to carry a cane but not use it) (not that perception matters, but it kind of does to me).
I wonder what it is about this disease that makes day to day so different. Some days I am at a higher level of functioning than others. It's so bizarre. I have never been quite normal since April (I am sure this has been a repetitive theme in my blogs), but one day I am walking with barely any problems and the next day I feel like I have those big old clown shoes on and stumbling all over the place.
Maybe I should wear a shirt that says If you pull me over for a sobriety test, I will fail, not because I've been drinking, but because I am MSing. Hope to never get caught at a checkpoint. I will surely fail their field test. The whole irony of that situation would be that I don't drink (very rare).
Anyway, just sort of rambling on. No real though process here. Having issues with that today too. I have noticed that my spelling is awful lately. I can't make a complete sentence. (except that one) My coordination for typing is way off.
This has really turned out to be a diary more than anything. I am sure that no one really reads these but they help me in the end. I have to tell you that looking up these end of the post quotes has been helpful too, inspiring.
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ...Mother Theresa
Friday, February 26, 2010
fatigue
Trying to beat this fatigue. I am so exhausted and drained. It takes everything I have just to move my body. My body feels like it's being weighed down by 10 tons when I get up and move around.
I think about how before I knew that I had MS and I would get this fatigue, it was so confusing. The "normal" me is very active and never stagnant so when this overwhelming fatigue would come I would think how "lazy" I was. It's not like I would just sit on the couch and not do anything. I would get up and do normal everyday stuff , but I was utterly exhausted after simple tasks. I would become so clumsy and stumble. It would never last for very long, just a matter of weeks and it would be like nothing ever happened. Now it's always with me and it frustrates me so.
When I was first diagnosed, the MS doctor asked me what my most troubling symptom was. I could have chosen from a plethera of symptoms such as foot drop in left foot, trouble walking, trouble talking, coordination problems etc....... But the Fatigue is the worst for me.
"If you're feeling low, don't despair. The sun has a sinking spell every night, but it comes back up every morning. The way I see it, if you want the rainbow, you gotta put up with the rain." Dolly Parton
I think about how before I knew that I had MS and I would get this fatigue, it was so confusing. The "normal" me is very active and never stagnant so when this overwhelming fatigue would come I would think how "lazy" I was. It's not like I would just sit on the couch and not do anything. I would get up and do normal everyday stuff , but I was utterly exhausted after simple tasks. I would become so clumsy and stumble. It would never last for very long, just a matter of weeks and it would be like nothing ever happened. Now it's always with me and it frustrates me so.
When I was first diagnosed, the MS doctor asked me what my most troubling symptom was. I could have chosen from a plethera of symptoms such as foot drop in left foot, trouble walking, trouble talking, coordination problems etc....... But the Fatigue is the worst for me.
"If you're feeling low, don't despair. The sun has a sinking spell every night, but it comes back up every morning. The way I see it, if you want the rainbow, you gotta put up with the rain." Dolly Parton
Tuesday, February 23, 2010
accupuncture
I went to accupuncture today. I can't believe that I was such a doubting Thomas before. She is amazing. Today we worked on not just my pain but also on my MS itself.
The needles themselves actually rarely ever hurt and compared to the injection I give myself every night, they are nothing. She feels the scalp for tender points and puts the needles in those places. I am amazed how she knows all the tender points. When I try to feel around I can't seem to find them, but when she presses down, OUCH!!!!! and this is just the scalp.
My session was longer than usual. The normal session takes about an hour, but today was a hour and a half. I fell asleep. Sometimes she puts these electrodes on my muscles that pulse and they end up making my muscles relax. What a relief to my tired and achy self.
I think the effects of the steroids are wearing off because the last three days I am taking more and more naps and actually sleeping through most of the nap. When I am on steroids, I can hardly sleep at all. The effects seem to stay with me for over a month after I stop taking them.
The needles themselves actually rarely ever hurt and compared to the injection I give myself every night, they are nothing. She feels the scalp for tender points and puts the needles in those places. I am amazed how she knows all the tender points. When I try to feel around I can't seem to find them, but when she presses down, OUCH!!!!! and this is just the scalp.
My session was longer than usual. The normal session takes about an hour, but today was a hour and a half. I fell asleep. Sometimes she puts these electrodes on my muscles that pulse and they end up making my muscles relax. What a relief to my tired and achy self.
I think the effects of the steroids are wearing off because the last three days I am taking more and more naps and actually sleeping through most of the nap. When I am on steroids, I can hardly sleep at all. The effects seem to stay with me for over a month after I stop taking them.
"Throw back the shoulders, let the heart sing, let the eyes flash, let the mind be lifted up, look upward and say to yourself... Nothing is impossible!"
Sunday, February 21, 2010
Sometimes when you are sick you can become so self-absorbed and not realize that there is a whole world out there that is suffering. I try not to dwell on my illness, but when I do I remind myself that I am not as bad as others and not as sick as most.
Today I went to church. As I have said before, this is a place that brings me joy and happiness. I feel so comfortable and welcome there. If you really knew me, that is saying a lot. I am shy and takes a lot for me to feel comfortable. I am good at faking comfort, when inside I feel a huge amount of anxiety. Church reminds me that there are people with bigger problems than I. I am lucky to be loved, loved by my family, friends and mostly importantly by God. He loves me no matter what I look like, how I walk, how grumpy I may be, and when I fall short of expectations.
"Worry weighs a person down; an encouraging word cheers a person up". Proverbs 12:25 (NLT)
Today I went to church. As I have said before, this is a place that brings me joy and happiness. I feel so comfortable and welcome there. If you really knew me, that is saying a lot. I am shy and takes a lot for me to feel comfortable. I am good at faking comfort, when inside I feel a huge amount of anxiety. Church reminds me that there are people with bigger problems than I. I am lucky to be loved, loved by my family, friends and mostly importantly by God. He loves me no matter what I look like, how I walk, how grumpy I may be, and when I fall short of expectations.
"Worry weighs a person down; an encouraging word cheers a person up". Proverbs 12:25 (NLT)
Saturday, February 20, 2010
So I started to use my cane again. I don't know why I struggle to use it when I clearly need it. I guess because it's an acknowledgement that I am not quite normal. The thing is I can walk so much better when I use it. I even take longer strides which in the end will probably help me with my muscle tone in my legs.
Wednesday, February 17, 2010
Bummer
Went to work today, made it almost the full 8 hours. I am still in my grumpy and blue faze. I just don't understand why I can't get back to a more normal state.
Hold on, Hit the brakes. This blog is not supposed to be so down in the dumps. Its supposed to be inspiring and uplifting. The problem is that this blogger needs some lifting up....... Hmmmm what to do.
I am going to say what I am grateful for given the MS. I am grateful that I can walk, albeit at a pokey pace, but still walking. I am grateful that I can still work, sort of. I am grateful that I am able to function and do my daily tasks on my own. I am grateful that when I do need help that I know my husband and my family and friends are there for me (especially my sweet sweet husband). I am grateful that my pain is getting so much better. I am grateful that I can afford my medications. I am grateful that I am able to see my doctors without worrying about medical bills piling up.
MS, this mysterious disease, is trying its best to make me miserable but I am determined to fight it all the way. Some days I may need to put on bigger boxing gloves and some days I may need a little bandaid here and there, but I am not going to let this illness take me down. I will kick and scream the whole way.
I will lift up my illness to the Lord and let him ease my troubles and worries. He will give me the strength that I need, no matter what I am fighting.
Today is Ash Wednesday and going to church will help my blues. I will pray and ask for strength and guidance.
Hold on, Hit the brakes. This blog is not supposed to be so down in the dumps. Its supposed to be inspiring and uplifting. The problem is that this blogger needs some lifting up....... Hmmmm what to do.
I am going to say what I am grateful for given the MS. I am grateful that I can walk, albeit at a pokey pace, but still walking. I am grateful that I can still work, sort of. I am grateful that I am able to function and do my daily tasks on my own. I am grateful that when I do need help that I know my husband and my family and friends are there for me (especially my sweet sweet husband). I am grateful that my pain is getting so much better. I am grateful that I can afford my medications. I am grateful that I am able to see my doctors without worrying about medical bills piling up.
MS, this mysterious disease, is trying its best to make me miserable but I am determined to fight it all the way. Some days I may need to put on bigger boxing gloves and some days I may need a little bandaid here and there, but I am not going to let this illness take me down. I will kick and scream the whole way.
I will lift up my illness to the Lord and let him ease my troubles and worries. He will give me the strength that I need, no matter what I am fighting.
Today is Ash Wednesday and going to church will help my blues. I will pray and ask for strength and guidance.
Tuesday, February 16, 2010
Blah!!!!
I am definitely in a funk. Depression is one of the symptoms of MS. I am wondering why??? My depression stems from the inability to do what I want. Not like a spoiled kid, but normal everyday things that I can't do, that I want to do. I am concerned that I may be at my new baseline, which means no more energy filled days. No more days spent outside hiking as I have a hard time concurring the curbs lately. My bike is just going to be a dust collector, bummer nice bike too. Still doing the Pilates and the occasional elliptical, not for too long.
Spent the day at the doctors and I just don't know what to think. You go there looking for answers and leave with more questions than anything. My doctor did not really tell me anything today, seems like I was doing a lot of talking and next thing I know, it was see you in 3 months unless you need me sooner. I am need you for what? What did you do for me? I could of just stayed at home and talked to myself in the mirror. HMPFFFFF!!!
My husband came home early from work to be with me and my sourpuss face. He loves me so much, as I do him. He wants my day to better and seeing him makes it better. He helps me physically when I need help walking as well on the days I need emotional support. I try not to overwhelm him, because I want to keep him around forever
Spent the day at the doctors and I just don't know what to think. You go there looking for answers and leave with more questions than anything. My doctor did not really tell me anything today, seems like I was doing a lot of talking and next thing I know, it was see you in 3 months unless you need me sooner. I am need you for what? What did you do for me? I could of just stayed at home and talked to myself in the mirror. HMPFFFFF!!!
My husband came home early from work to be with me and my sourpuss face. He loves me so much, as I do him. He wants my day to better and seeing him makes it better. He helps me physically when I need help walking as well on the days I need emotional support. I try not to overwhelm him, because I want to keep him around forever
~ Love is not blind - it sees more, not less. But because it sees more, it is willing to see less ~
Monday, February 15, 2010
Grumpy
Today I feel like one of the twelve dwarfs from Snow White. I am definitely Grumpy. I don't like anything today.
I am so exhausted. Worked Thursday, Friday, Saturday and went to church yesterday and then took my kids to the movies. We went to the 140 show, which was sold out and then waited around for the 400 show. That doesn't seem like much effort, but it totally wiped me out. So today I am exhausted and grumpy.
I am grumpy because I want to be doing things today, but I know that tomorrow will be at 3 different doctors appointments starting at 0830 and the last one at 300, so I can't exhaust myself today other wise the rest of the week I will pay for it. The hospital is almost an hour away so I will be there all day and then come home cook and be tired because of dumb old MS. Then I work 3 days in a row.
Now someone who doesn't have MS, is probably thinking big deal. Well, imagine taking all of your daily energy and using it up in one hour and then keep going with no energy reserve and try to run a marathon, that's MS for me anyway. It's like my energy is on a one hour hourglass and it flows fast if I don't get to take breaks. Being out and about, it flows quickly. No nap to re-energize.
"I walk slowly, but I never walk backward." - Abraham Lincoln
Thursday, February 11, 2010
oddity
Made it through 7 hours at work today, must be getting a little more stamina.
I noticed a new strange symptom the last few days. So my left leg and foot have been my lingering problem since August of last year. Always having the numbness and tingling. Well now when I am barefoot on my tile floor, the temperature sensation in that foot is vastly different than my right. It is so bizarre. My right foot knows the tile is cold instantly, but my left foot has a very remote sensation that the floor is cold. It's hard to explain but it's very different. Right foot is 100% cold sensation and my left foot is like only 20% cold sensation.\
Then I also get this sensation of cold heat to my feet. My feet will feel like they are burning and when I touch them they are cold like ice. What the heck is going on here????
I noticed a new strange symptom the last few days. So my left leg and foot have been my lingering problem since August of last year. Always having the numbness and tingling. Well now when I am barefoot on my tile floor, the temperature sensation in that foot is vastly different than my right. It is so bizarre. My right foot knows the tile is cold instantly, but my left foot has a very remote sensation that the floor is cold. It's hard to explain but it's very different. Right foot is 100% cold sensation and my left foot is like only 20% cold sensation.\
Then I also get this sensation of cold heat to my feet. My feet will feel like they are burning and when I touch them they are cold like ice. What the heck is going on here????
Still doing my Pilates. Boy does it make my pain in my left hip feel better. I don't know if its the stretching or what. I don't look any different though. Wish this stupid steroid weight would go away. Never had a big belly, now it just won't go away. Go away big belly, go away!!!
"you're never beaten until you admit it".....George S. Patton
Tuesday, February 9, 2010
Energizer Bunny
My husband bought me this little netbook for Christmas, was the best thing he ever got me. I can sit and do my blog while lounging at the end of the day. It's hard to sit at a PC and focus when all I really want to do is lounge. My energy level is zapped and the more conservation the better.
I had my accupuncture appointment today and I alway leave there feeling so much better. I don't know how it works, but it does. My pain is significantly reduced and I get to rest during the therapy. Its so relaxing. I leave there feeling re-energized. Now if I could only figure out how to stay that way.
When I came back from my appointment I ran around doing chores in my house and there went the Zen I had achieved. Wiped myself out and ended up on the couch taking a 2 hour nap. Then did a few more things and now I am back at the complete exhaustion state.
Today I am not going to do my Pilates, mainly because I am so tired. Sounds bad, but....... They say when you exercise it's supposed to give you more energy, but when I exercise I am fried. Even the small amount I do seems like marathon. Maybe I will get back to the point when my strength and stamina will be near normal. Maybe if I change my batteries, I could be like the Energizer Bunny. Maybe that's the secret. Hmmmmm....
I had my accupuncture appointment today and I alway leave there feeling so much better. I don't know how it works, but it does. My pain is significantly reduced and I get to rest during the therapy. Its so relaxing. I leave there feeling re-energized. Now if I could only figure out how to stay that way.
When I came back from my appointment I ran around doing chores in my house and there went the Zen I had achieved. Wiped myself out and ended up on the couch taking a 2 hour nap. Then did a few more things and now I am back at the complete exhaustion state.
Today I am not going to do my Pilates, mainly because I am so tired. Sounds bad, but....... They say when you exercise it's supposed to give you more energy, but when I exercise I am fried. Even the small amount I do seems like marathon. Maybe I will get back to the point when my strength and stamina will be near normal. Maybe if I change my batteries, I could be like the Energizer Bunny. Maybe that's the secret. Hmmmmm....
"The man who smiles when things go wrong has thought of someone to blame it on." .....Robert Bloch
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