tag:blogger.com,1999:blog-12109827332577756902024-03-19T01:41:22.950-06:00MS and daily lifeTitle pretty much says it all. Journal of dealing with this very confusing condition on a daily/weekly basis. Sharing laughter, frustrations, and all the emotions that come with Multiple Sclerosis.bltomson@gmail.comhttp://www.blogger.com/profile/08314277633540409181noreply@blogger.comBlogger104125tag:blogger.com,1999:blog-1210982733257775690.post-75876821451713975872012-10-29T13:11:00.000-06:002012-10-29T13:40:09.675-06:00Hope springs eternal<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: #20124d; font-family: Verdana, sans-serif;">A few days ago, my family and I went to a conference on MS titled "Is it Me or My MS</span></strong>?"<strong> <span style="color: #20124d; font-family: Verdana, sans-serif;">Their was a doctor answering questions and informing us on the symptoms and progression of MS. Of course, it was sponsored by a drug company so the doctor was not allowed to talk about medications other than the sponsored medication.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">W<span style="color: #20124d;">hen we first arrived, I looked around to what was a very small amount of people. I was a little surprised for two reasons. 1. There was a free dinner and who wants to do dishes right? 2. I know the more I deal with this illness, the more questions I have.</span></span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">We looked around the small conference room and at the corner back table, there was a lady in a wheelchair with two people on either side of her motioning me over to sit down at her table. At first, I thought maybe she thought I was someone else, but I decided that would be our table.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">Once we sat down, I realized how severely disabled she was. She was very hard to understand. She was confined to a wheel chair and was very inhibited in many other ways. She was unable to drink out of a regular cup and was using a childs sippy cup. Her two friends had to help her eat. She dropped her fork at least 5-6 times during the meal.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">I have to admit that at first I felt a little uncomfortable. I am naturally pretty shy and have a poor comfort zone around new people, but this was not my main reason for being uncomfortable. My main reason was related to her stage in the disease we share. The first thought that came to my mind was is this my destiny? Am I going to be like her?</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">Through our very broken conversation, I found out that the main reason she was there was to find out if there was any medication she could take to get out of the wheelchair. I found out that she had only been in that wheelchair for a few weeks. I also found out that when she was at my stage, she was not compliant with her medications. Meaning she had no desire to take the medication (shots) she was prescribed. I did not ask her why, but I did reflect on those days I skip my shot because I grow so tired and weary of taking it daily.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">At the end of the conference, what I took home from this woman, is that no matter at what stage you are, you keep hoping. One of the questions she posed to the doctor was if she could start taking the sponsored medication to help her get out of the chair. I felt sad. She was beyond the point for these medications as their purpose is to delay us to get where she is. The doctor's response was to defer her to her doctor. I understood what that meant and my husband mentioned it later as well.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">Even though she was already progressed, she had hope. She had hope to be able to walk again. Hope to be independent again. Hope for a cure. Hope to heal.</span></strong><br />
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1210982733257775690.post-83895386071584416882012-10-04T18:49:00.002-06:002012-10-04T18:49:14.784-06:00Sum it up<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: #20124d; font-family: Verdana, sans-serif;">Well it has been a few months since I lasted posted, the whole summer actually. Main reason is that it turned out to be a pretty busy summer. I was "sick" for a little part of the summer, regressed to using a walker, but am now happily back using my cane. However, I did buy me a new snazzy walker with 3 wheels. Turns on a dime. I actually think I walk better using the walker, but it is not always necessary.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">I am glad that the heat is being "turned down". My body was not happy with it. Spent time indoors, but our swamp cooler was not keeping up with the heat of the day,so I watched ALOT of t.v. Boring. </span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">August was spent with my parents who happen to have central air. Oh glorious central air, why have thee forsaken me. I LOVE CENTRAL AIR. Here is the funny thing about me though, I get cold. So here I am with the glorious central air, covered up with a flannel throw. </span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">Now the temperature is perfect. 70's. I love the 70's. I can function so much better. Yay for the 70's. Still cover up though :)</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">I did get to go on vacation with my family. It was wonderful. Took alot of naps to be able to get through each day. Nice to be away though, get out of the house and all.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">Hmmmm.....so the time I did spent with my parents, I got fed ALOT of food. Oh boy. My pants are not happy with me right now, so now that I am back in town, I will be going back to swimming and working with a trainer to help me. Bathing suit......ARGHHHHHHH</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;"><img alt="" class="rg_hi uh_hi" data-height="198" data-width="254" height="198" id="rg_hi" src="https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcRaDVNkJ_m300ZHE7l03U5FEZ-k5aNUbD9C5uLvcFan8p4O_UYo7w" style="height: 198px; width: 254px;" width="254" /></span></strong><br />
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<strong>Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. </strong><br />
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<strong>Philippians 4:6-7<span style="color: #20124d; font-family: Verdana;"></span></strong>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1210982733257775690.post-40554992573566950062012-05-17T15:58:00.001-06:002012-05-17T17:43:25.951-06:00Sunshine and roses<div dir="ltr" style="text-align: left;" trbidi="on">
I am tired. That pretty much sums it up. Well that and maybe I slightly overdid it yesterday. So I am tired with a clean house :)<br />
I am sitting here looking through my screen door at my roses and flower garden. How nice it must be to bloom in the sun. Having the warmth spread all over your face and soaking it all in. Sunshine is not my best friend now a days. Well let me reiterate, heat is not my best friend. MS and heat = vision fade in right eye, an exacerbation of clumsiness, balance problems, increase in leg fatigue, numbness and tingling, exhaustion within minutes and the best one is the drunken speech. I bet the flowers don't have that problem. Maybe they do in a way. If you don't water them, they droop. Maybe MS is like a watering problem in the heat. If you can't cool down you droop. Hmmmm, interesting.<br />
Still, love the sunshine. Now I enjoy it in the early morning or as it is setting. Beautiful times of day. Bought a cooling vest, but that didn't really work out so I can enjoy it from a distance. Watching the butterflies on the flowers. Our adopted lizard who has made our garden his home; we named him Bob. He comes back every year. The beautiful and tantilizing colors make me shine just like the sun. My inner sunshine comes out.<br />
<img height="1200" src="http://romelloroberts.files.wordpress.com/2011/04/sunshine.jpg" style="height: 100%; width: 100%;" width="1600" /><br />
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<a href="http://www.youtube.com/watch?v=E1fzJ_AYajA&ob=av3e">http://www.youtube.com/watch?v=E1fzJ_AYajA&ob=av3e</a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-24420488375060635032012-05-15T20:27:00.002-06:002012-11-21T10:11:28.709-07:00Ruby Red Slippers<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Paying a little for the overdoing yesterday. It's a hard balance between participating and surviving. When my energy is up and I can do more things, I just can't help myself. Still striving for my yesteryears. So today, I am exhausted. Managed to do a couple loads of laundry and had my daughter take me to the store for some household goods, then it was everything I could muster to cook dinner.</strong></span><br />
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<strong><span style="color: #20124d; font-family: Verdana;">It's funny the silly things that come to mind when you are deprived of certain things. So a while back I posted about an AFO I have to wear related to some mild foot drop. The problem with it is the design is strictly for tennis shoes that have removable soles. The AFO fits under the sole, which means cute sandals, flip flops are completely out.</span></strong><br />
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<strong><span style="color: #20124d; font-family: Verdana;">Here's the thing, I like cute shoes. I never was a high heel gal, but cute sparkly shoes I love. Today I went to the store in cozy flip flops and it makes so much harder to walk. My leg gets so tired and my cane gets more of a work out. Darn it, I want Ruby Red Slippers like Dorothy had. Ones that can take me over the rainbow where I can be "normal" again, not to mention stylish.</span></strong><br />
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<strong><span style="color: #20124d; font-family: Verdana;">I have settled for wearing Vans. They actually have sparkly red ones, maybe I will get them. They can be my new Ruby Reds. I guess sometimes you have to create your own rainbows. I am working on that. </span></strong><br />
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<a href="http://www.youtube.com/watch?v=PSZxmZmBfnU">http://www.youtube.com/watch?v=PSZxmZmBfnU</a></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-77640677171425527752012-05-14T16:24:00.001-06:002012-05-14T16:24:16.075-06:00Day to Day<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: #20124d; font-family: Verdana, sans-serif;">It seems I am in a bit of a remission period. I am grateful, but I can't help but waiting for the floor to fall out from underneath me at any given moment. I have had steady improvement since my last big incident in January with the only setback being a slight gallbladder incident.</span></strong><br />
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<strong><span style="color: #20124d; font-family: Verdana;">Today I spent the day cleaning. Slowly. I remember the days when it would only take me a few hours to clean the house top to bottom spotless. Now I am slow and steady with frequent breaks but I am happy with that considering a few months ago it was an impossible feat.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">I wonder if that person I used to be would understand the person I am now? It seems that I would never sit still and now I sit around so much more than I can stand. </span></strong><br />
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<strong><span style="color: #20124d; font-family: Verdana;">It makes it so difficult for me and somewhat embarassing to know that I am not working. I worked so hard to become an R.N. and I long so much to be one again. I still have my liscense and it has been less than a year since I worked, but I miss it so much. I look at the job openings and wonder if I will ever be that person again. I think that doctors don't understand how much more encompassing this illness is. It's just not the physical but everything in your life. NOt just what they can test with their little instruments. They can tell you that you seem better, but it's so much more than that. Its the day to day struggles that they don't see. Sure, today I am walking, talking better, but no way I can have the life I once had. The life I was so content with. The one I long for. They are not here to see how hard I try to keep that aspiration by working on my stamina. I can hardly do more than a few hours in the house with out multiple rest periods and it's so frustrating. I want to be a nurse again!!!! I want to work. I want to have friends to talk with on a day to day basis. I want that comradarie. I want everything the way it was, but for now I am living day to day.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;"> </span></strong></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-46420257778910049702012-04-02T23:36:00.001-06:002012-04-02T23:36:49.128-06:00swimming with your head above water<b><b>When I first started this blog I must admit that I had some delusions of grandeur. I figured everyone I know would be reading this and become instantly inspired. Well that certainly had not been the case at all. I can't even get my own family members to read it so I have just decided to let it be what it has evolved into, an online journal.<br />
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For the first time in many many months, I have been feeling good. I went from using a walker in January walking only a few feet to not needing a cane in the house. My cane is still my companion once I leave my front door, but my stamina has improved so much. I am or as tired as I have been, still have to be careful about doing too many tasks. I tire very easily. The hot season is near by and I don't need any setbacks.<br />
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It is so weird to think that a few years ago I would never have thought about these things. My walk was alerts brisk and I rarely sat still. I was a working machine and nothing could stop me. That was until multiple sclerosis started to rear its ugly head.<br />
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I have decided to do a little more for my body. My biggest fear is to end up in that wheelchair or worse. I am back in the gym swimming. It is such a strange sensation because there are parts of my body that I have no control over. My left foot for example just kind of flops around and does it's own thing. My left hand, I can't control some of the fingers and the spread apart when I am swimming. This is the nerve damage that I may never regain but I am going to do my best to prevent what I can. I can tell that my left side is so much weaker as it tires out so much faster, but slowly but surely I hope to regain that strength. For now I am a work in progress and I hope that this disease will leave me alone for awhile, actually forever sounds good to me! The other thing I hope for is the courage and mindset to keep going to the gym. It's hard and I dont want to give up.</b>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1210982733257775690.post-16811261818778323292012-02-21T14:28:00.001-07:002012-02-21T14:28:37.212-07:00MS Hug<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: #20124d; font-family: "Trebuchet MS", sans-serif;">Hugs. When you think of a hug, you imagine something warm and comforting. A MS hug is far from comforting; it's something that you dread. It comes on all the sudden and can last for a few minutes or for hours. I posted the details of what causes it and what it can feel like in the previous post.</span></strong><br />
<strong><span style="color: #20124d; font-family: Trebuchet MS;">For the past few days and a couple times in December, including one on Christmas day, I had the pleasure, errr.....rather displeasure of feeling this hug in full action. I have always had an uncomfortable feeling at times around my waist, kind of like when you wear pants that are too tight. </span></strong><br />
<strong><span style="color: #20124d; font-family: Trebuchet MS;"> But the past couple of days, I have woke up with the worst kind of chest pain imaginable. Picture the scene in Indiana Jones and the Temple of Doom where the dude reaches into the characters chest and squeezes his heart out. That is the only imagary I know how to explain what I felt. I felt like something was squeezing my heart and would not let go. </span></strong><br />
<strong><span style="color: #20124d; font-family: Trebuchet MS;">The previous times I had this it only lasted about 20-30 minutes, but a few nights ago, it woke me straight up from sleep. I had previously gone to the hospital in December thinking I was having a heart attack, but everything came out normal, so this time I decided to wait it out. An hour past, then 2, then 3 and the pain was so excruitiating. The pain is so bad that it makes me want to vomit, or nearly vomit. I tried pain medication with no effect. We finally called 911. I just could not take the pain anymore. Nothing I did was making it go away. My poor husband just did not know what to do. </span></strong><br />
<strong><span style="color: #20124d; font-family: Trebuchet MS;">I get to the hospital, the did all the cardiac tests, and the doctor cleared me from any heart issues. They determined it was the MS hugs. I received a boat load of IV pain medication in order for the pain to go away. I slept away the whole next day. Last night it came back again. Awful, horrible pain. Worse than giving birth to my 2 children, and I did not have pain medication with them. Last night, luckily, it only lasted 20 minutes and they had prescribed me pain medication. </span></strong><br />
<strong><span style="color: #20124d; font-family: Trebuchet MS;">I fear that pain coming back. I wish that pain on no one. I can't imagine any pain worse than that and if there is, I hate to even think of it. I hope that none of you ever have to experience it.</span></strong></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-27954320395665475832012-02-21T14:13:00.000-07:002012-02-21T14:31:40.537-07:00"Chest hug" is not life-threatening : National MS Society<div dir="ltr" style="text-align: left;" trbidi="on">
<a href="http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=1158"><span style="color: #20124d;">"Chest hug" is not life-threatening : National MS Society</span></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-16767289225241863752011-12-08T23:14:00.001-07:002011-12-08T23:36:15.698-07:00Tis the Season<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: #4c1130; font-family: Verdana, sans-serif;">Wow! I sure have been avoiding the blog lately. I don't know why. I feel like I don't have anything to write about when I know I have a million rampid thoughts running aroung in my head daily. </span></strong><br />
<strong><span style="color: #4c1130; font-family: Verdana;">It's Christmas time. Today we put up the tree. Usually we have it up the weekend after Thanksgiving. I normally decorate the house with all my little trinkets that I collected throughout the years. We put on Christmas music, put on out Santa hats, and drink hot chocolate. Today we just put up the tree and a couple of knick knacks and then I took a two hour nap.</span></strong><br />
<strong><span style="color: #4c1130; font-family: Verdana;">I did manage to get the nativity set out. That of course is the one thing that will always get put out as the true symbol of this time of year, but I am not sure if I can muster the energy for anymore decorating. The problem with the decorating is not the decorating itself, is knowing that you will have to eventually put it all away. Just the thought of that makes me want to take another nap.</span></strong><br />
<strong><span style="color: #4c1130; font-family: Verdana;">Christmas shopping is so much easier now with the internet. Internet sales are just as good with free shipping on most websites and can do it from the comfort from my own home. I did venture to a store or two, not during any busy times, with my lovely daughter, but I can never last more than an hour out before I am totally wiped out.</span></strong><br />
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<strong><span style="color: #4c1130; font-family: Verdana;">This is my favorite Christmas song:</span></strong><br />
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<a href="http://youtu.be/4cP26ndrmtg">http://youtu.be/4cP26ndrmtg</a><br />
<br /></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1210982733257775690.post-20664564347677648862011-10-29T22:40:00.000-06:002011-10-29T22:40:10.562-06:00Life goes on<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: #20124d; font-family: Verdana, sans-serif;">So the funny thing about life is that it just goes on. No matter what you feel like. Happy, sad, tired, full of pep, ready to concur the world, or ready to hide under the covers. Life happens. It has taken me so long to write this next post, because I was at a standstill while life was happening. </span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">Had another MRI, 10 lesions, with "slight" progression of demyelation. Makes me wonder what their definition of slight is. </span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">The trouble with MS is that life does happen. In the past couple of months, I have had a relapse, a father whose cancer has returned, worries over a teenage daughter who is struggling in school academically and socially, a son who is autistic, feelings of isolation, having a change of social environment for myself, missing working in the hospital as an R.N. and so many more life style adjustments I can't even remember, frustrating doctors, oh and an increase in some pain, especially in my head.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">The past few days, I have been able to walk a little bit better. This always offers a little hope. I went to a craft fair today. How I love to go to craft fairs. Brought my spirit up. All those people. I just love to watch them. I wonder if they know how lucky they are to be able to walk around and browse. I lasted a little longer than usual, about an hour and a half, but I was dragging my feet along with my cane by the time we left. It was definitely worth it. I will probably pay for it with exhaustion for the next few days, but today I was part of life. </span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">It is night. I am sitting here typing this and my eyes are so tired, I can hardly focus. I know that when I get up from this recliner, I will be stumbling down the hall, running into the walls, trying to make it to my bedroom without knocking any of the pictures down. The truth is, it will be worth every ache in pain and step backward I will take tomorrow, because today I got to participate.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">My hope is tomorrow, I will be lucky enough to participate too. MS is strange that way. You just never know what you will wake up to. More than likely, it won't be so great, but you never know. Maybe, just maybe, I will be on a lucky streak.</span></strong><br />
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<a href="http://youtu.be/w_DKWlrA24k">http://youtu.be/w_DKWlrA24k</a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-51790014847854878292011-10-02T19:43:00.001-06:002011-10-02T19:43:31.530-06:00sanity<div dir="ltr" style="text-align: left;" trbidi="on">
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">I got this MS poem off of the MS Society's discussion board and thought I would share it. I guess you have to be able to laugh at yourself at times to keep some semblance of sanity.</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana;">I think that the side-effects from the seizure medication Topamax are starting to ware off some what. I am starting to regain my sanity and a little more of my energy. What I am losing is my right side. UGHHHHH!!!!!!!! My left side has been consistently weak for over a year and a half now, but my right side will be weak for a week or two and recover, but now I am afraid it's not recovering at all. As Sir Winnie the Pooh says "Oh Bother".</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana;">I can tell you that I am a little bit afraid. OK, a lot afraid. Maybe, it's just seeming to take longer cause of this stupid Topamax making me loopy for so long and sleepy for so long. Yea that's it. That's what it is.</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana;">I did get to go to the Balloon Fiesta yesterday. It was absolutely beautiful. Over 400 hotair balloons launching over my head. Used my walker with the built in seat and was able to to do it. Usually refuse to use my walker and stick with my cane, but I would not been able to do it otherwise and it was definitely worth it. The best part of it was that the Creamland Cow Shape Balloon actually took off this year. Woo Hoo. It's the little things in life that make you smile. You have to enjoy these things and not take them for granted. Life is grand, no matter how you have to enjoy it, make it work for you :o)</span></em></strong><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-30760915798266199062011-09-20T14:59:00.001-06:002011-09-20T15:04:34.381-06:00Cognitive Dysfunction<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="color: #20124d; font-family: Verdana, sans-serif;">Article obtained from: <a href="http://ms.about.com/od/signssymptoms/a/cognitive_over.htm?p=1">http://ms.about.com/od/signssymptoms/a/cognitive_over.htm?p=1</a></span><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">Cognitive Dysfunction as a Symptom of Multiple Sclerosis</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">By Julie Stachowiak, Ph.D., About.com Guide</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">Updated November 24, 2008</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">About.com Health's Disease and Condition content is reviewed by the Medical Review Board </span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">.Ever feel lost?</span></em></strong><strong><br /><em><span style="color: #20124d; font-family: Verdana, sans-serif;"></span></em></strong><br />
<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">Stephen Schauer / Getty Images</span></em></strong><br />
<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">"Cognitive dysfunction as a symptom of multiple sclerosis 1(MS) may be the one that makes me the saddest. I can get angry at the “MS hug2” and frustrated with trembling hands3, but being mad at how my own brain and though patterns are misfiring is a little too complicated. It is also the symptom that is the hardest to talk about with people without MS, as it often comes across as a lame-sounding apology for being “ditzy” or is met with people mentioning how forgetful they have also become since they had children or turned 70. </span></em></strong><br />
<strong><br /><em><span style="color: #20124d; font-family: Verdana, sans-serif;"></span></em></strong><br />
<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">Sure, we all misspell words sometimes or leave something off a list. However, many of us with MS have a moment that we can point to as evidence that the cognitive neurons are not as robust as they used to be. My “big moment” came when I intended to dash into a store to pick up some last-minute holiday wrapping supplies. I got into the middle of a big display area of giant shelves of shiny, colorful paper and ribbons – there was loud Christmas music blaring, twinkly lights blinking everywhere, and people grabbing at sale items while screaming at their out-of-school children. All of this “input” combined to not only completely make me forget what I came for, but to completely immobilize me. I don’t know how long I stood there staring uncomprehendingly at the whole scene before something jarred me back to reality and I fled from the store, empty-handed. </span></em></strong><strong><br /><em><span style="color: #20124d; font-family: Verdana, sans-serif;"></span></em></strong><br />
<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">What Does It Feel Like?</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">While cognitive dysfunction feels different for everyone and can change daily, many people with MS can identify with part or all of the following descriptions of MS-related cognitive problems: </span></em></strong><br />
<strong><br /><em><span style="color: #20124d; font-family: Verdana, sans-serif;"></span></em></strong><br />
<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">•Problems with Abstract Conceptualization: Put simply, this is difficulty with figuring things out in the “abstract” in a way that is going to lead to a desired outcome. It means that people get easily overwhelmed if something is too complex, as it is hard to organize thoughts and tasks, to apply lessons learned from multiple past experiences, and to be “flexible” enough in their thinking to come up with alternate solutions if a problem arises. This can negatively impact judgment. </span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">•Short-Term Memory Deficits: The most common form of cognitive dysfunction in MS, this usually manifests in things like forgetting whose number you just dialed, going to the pantry and not knowing what you went there for (even though you just looked at your recipe), or being unable to remember if you took your pills or not. You may also find yourself repeating a sentence or part of a story to someone that you just told it to, not aware that you had already said it. </span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">•Attention Difficulties: This can manifest as “distractability” or simply inability to keep your mind on a task. You may find that you are unable to multitask or that even minor ambient noise, like the television or music, can make it virtually impossible to concentrate on things like reading or performing sequential tasks, like those involved in cooking. </span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">•Slower Speed of Information Processing: This includes all the aforementioned symptoms, and it means that the brain simply cannot take in and prioritize all of the information coming at a person at once. This includes problems processing language (spoken or written), sensory information (visual, sounds, smells, touch), spatial information (like that involved in navigating while driving), or more abstract things like social cues and reading people’s emotions.</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">How Common Is Cognitive Impairment?</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">Between 34 and 65 percent of people with MS have some sort of cognitive impairment. Even people who recently started having other MS symptoms may have cognitive dysfunction, but it might be so subtle that they didn’t notice it or attribute it to other things, such as aging or being tired. </span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">What Causes It?</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">Cognitive dysfunction in MS seems to correlate with more permanent destruction of brain tissue, such as “black holes” and atrophy4. Therefore, cognitive dysfunction tends to be worse in people with progressive forms of MS than in people with relapsing-remitting MS. In general, people with progressive MS seem to be more severely affected (however, as mentioned, even people with very little disability can experience some degree of cognitive dysfunction). People with more pronounced cognitive dysfunction tend to have:</span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">•More T1-Weighted Lesions: T1-weighted lesions 5in MS are areas that appear dark on MRI scans 6. These are also called “black holes” and indicate that there has been destruction of nerve fibers called axons7, not just demyelination. </span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">•Atrophy of Corpus Callosum: This means that the bundle of nerve fibers that connect the right and left hemispheres of the brain has shrunk, due to destruction of nerve cells.</span></em></strong><br />
<strong><br /><em><span style="color: #20124d; font-family: Verdana, sans-serif;"></span></em></strong><br />
<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">However, it can also be made worse temporarily by other symptoms of MS8, such as: </span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">•Depression: Depression9, an extremely common symptom of MS, seems to impact cognitive function, especially in the areas of memory, attention and ability to concentrate. People who are depressed also often exhibit problems making good decisions, communicating and maintaining relationships with others and overall complex functioning, such as that required to make quick decisions and cope with complicated problems in everyday life. </span></em></strong><br />
<strong><br /><em><span style="color: #20124d; font-family: Verdana, sans-serif;"></span></em></strong><br />
<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">•Fatigue: Fatigue10 is the most common symptom of MS, experienced by an estimated 85 to 95 percent of people with MS, and often considered the most debilitating. The crushing fatigue felt by people with MS can have a huge impact on how well we perform cognitively. </span></em></strong><br />
<strong><br /><em><span style="color: #20124d; font-family: Verdana, sans-serif;"></span></em></strong><br />
<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">•Heat Intolerance: MS-related heat intolerance11 can make all symptoms of MS worse, including cognitive dysfunction. </span></em></strong><br />
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">How Severe Can It Get?</span></em></strong><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Cognitive problems in people with MS can become severe enough to make it difficult to work in a profession that requires speedy or complex problem-solving. Most people, however, can develop coping techniques that keep cognitive symptoms from interfering with daily life too much. </strong></span></em><br />
<em><br /><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong></strong></span></em><br />
<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Real, debilitating dementia as a symptom of MS is very rare, occurring in less than 5 percent of patients, who are usually very severely affected by other MS symptoms. In contrast to other types of dementia, such as that caused by stroke or Alzheimer's disease, the following problems are NOT usually associated with MS-related cognitive dysfunction:</strong></span></em><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>•Aphasia: Aphasia is the inability to understand the speech of other people and/or express oneself verbally. While people with multiple sclerosis (MS) often have trouble finding words or communicating, this is more often dysphasia, a symptom of MS that is not as severe as aphasia. </strong></span></em><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>•Agnosia: Agnosia is difficulty recognizing familiar things, such as shapes, sounds, objects, people and smells.</strong></span></em><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Additional Points/Information</strong></span></em><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>It Comes and Goes: Just like many other MS symptoms, cognitive problems will probably be worse at certain times. Other times, you may feel like your old self. See if there is a pattern to this (you may want to keep a symptom log or at least jot down notes for a couple of days). As much as possible, plan critical tasks for those times when you feel your sharpest. Also, notice if certain things make your cognitive problems worse – music, sounds from the television, encounters with certain people, even different kinds of lighting can have profound effects on cognition. When possible, adapt your environment and situation to make things better for you. </strong></span></em><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Remember, Life is Complex: Fight the urge to be hard on yourself or get too frustrated when something “slips through the cracks” and you are late to an appointment or forget to return a phone call promptly. If you think about it, pretty much everything we do involves many, many steps, requiring: use of long-term and short-term memory, monitoring and adapting to the reactions of others, simultaneously performing many related and unrelated tasks – all while often fighting fatigue or a number of other symptoms that we might have. Try an experiment for yourself: Take a child grocery shopping, cook dinner while talking on the phone or observe yourself getting ready for a meeting. Look at how many things have to happen to get from Point A to Point B and marvel that anyone gets anything accomplished. </strong></span></em><em><br /><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong></strong></span></em><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>My Experience</strong></span></em><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>The first cognitive problem that I became aware of was a gradual fear of driving. At first, I would feel anxious that I would forget directions and be so preoccupied with getting lost that I would be stressed out when I went anywhere. Then I noticed that driving along even very familiar routes was becoming increasingly scary – I would be afraid to change lanes, nervous that I was going to run red lights, distracted by too many cars, frightened of big trucks and uneasy if the lighting was too bright, too dark, too dappled. As I had not yet been diagnosed with MS, I just told myself that I was being silly and kept pushing it, until the anxiety started really limiting my activities. </strong></span></em><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Since my diagnosis, I have noticed many more cognitive symptoms. Conversations are sometimes hard to keep up with and I often find myself making a point out of context. I know that I repeat myself a lot and have a habit of not finishing sentences. When I am writing, I fight the urge to steer away from certain words that I seem to have forgotten how to spell. </strong></span></em><em><br /><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong></strong></span></em><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>I've made several adaptations when it comes to driving: I haven't driven on the highway in many years, and I prefer to drive alone, so that I can focus 100% of my attention on the road and what I am doing. But on good days, I still try to make small neighborhood trips during quiet traffic times. Aside from driving, I have noticed that I sometimes want to avoid conversation so people don't pick up on any of my cognition problems. But because I want to stay engaged and social, I make a serious effort to chat with people -- I figure no one will be seriously injured (unlike driving) if it takes me a couple of minutes to find the word that I am looking for or I tell a story for the second time in five minutes. "</strong></span></em><br />
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<strong><span style="font-family: Verdana, sans-serif;">This is not my article, but obtained from about.com. The link is above, but is reflective of what I feel a lot of the times.</span></strong><br />
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<em><span style="color: #20124d; font-family: Verdana, sans-serif;"></span></em></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-21891716315661207672011-08-22T22:02:00.000-06:002011-08-22T22:02:17.698-06:00Copaxone<div dir="ltr" style="text-align: left;" trbidi="on">
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<strong><em><span style="color: #20124d; font-family: Verdana, sans-serif;">So I was sitting here thinking about what to blog about and all I could come up with was my very boring shot. I was going to basically copy and paste information on what my shot is and what it is used for. Blah, blah, blah, blah, blah BORING. So if you really are interested in that I will just paste the link and you can read that information for yourself. I mean it is interesting on how theoretically it works and how many people it theoretically have had prolonged there relapse periods for. People have done amazingly well on Copaxone. If you like the technical aspect on which cells it works on in the body, it really is fascinating too.</span></em></strong></div>
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<a href="http://www.sharedsolutions.com/">http://www.sharedsolutions.com/</a></div>
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<strong><span style="color: #20124d; font-family: Verdana, sans-serif;"><em closure_uid_chfmy7="154">The other day I was so bored, I was looking up celebrities with Multiple Sclerosis. There are a few, not many. I guess I was just curious to see if money and power can get you out of being afflicted too, but apparantly not. Montel Williams, Annette Funnicello, Richard Pryor, Squiggy (from Laverne & Shirley) and Terri Garr oh and one of the Osmond brothers are the ones that I can remember off the top of my head.</em></span></strong></div>
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<strong><em><span style="color: #20124d; font-family: Verdana;">I know that Richard Pryor passed away from complications and Annette is pretty much vegetative, everyone else seems to be doing okay. Hopefully, life is looking up for them.</span></em></strong></div>
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<strong><em><span style="color: #20124d; font-family: Verdana;">Well as for me, trying to keep my chin up. Still increasing the dose weekly on my seizure medication. Making me dopey, just like one of the seven dwarfs. I am at 75mg twice daily with a goal of 100mg twice daily, so if my typing is off or goofy or dopey, just have a hearty laugh at my expense, believe me, I plan to revisit these pages later when I have stabilized to do the same thing.</span></em></strong></div>
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<strong><em><span style="color: #20124d; font-family: Verdana;"><a href="http://youtu.be/kC7NpEISWxU">http://youtu.be/kC7NpEISWxU</a></span></em></strong></div>
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<span><iframe align="left" frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=msandda-20&o=1&p=8&l=bpl&asins=B002YKOXB6&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="align: left; height: 245px; padding-right: 10px; padding-top: 5px; width: 131px;"></iframe></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-69101352911798919682011-08-15T14:09:00.036-06:002011-08-15T14:37:42.893-06:00Inspiration in times of trouble and illness<div dir="ltr" style="text-align: left;" trbidi="on">
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<strong><span style="color: #073763; font-family: Verdana, sans-serif;">A very dear friend of mine wrote of an experience she encountered that should be an inspiration to us all, sick or not. This is her story reprinted with her permission.</span></strong></div>
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<strong><span style="color: #660000; font-family: Verdana;"><em>"I just wanted to share an incredible story of the love of God I saw in a homeless woman.</em></span></strong></div>
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<span style="color: #660000; font-family: Verdana, sans-serif;"><strong><em closure_uid_vdzu6x="150">I had seen this car off and on in an abandon parking lot for about a month. I had thought of stopping several times but was too busy or afraid I would not know what to say or how to relate to this person.</em></strong></span><br />
<span style="color: #660000; font-family: Verdana, sans-serif;"><strong><em>So tonight I left work late again, feeling sorry for myself for working such long hours for the past month and feeling no so thankful for my life. I told God I was sorry because I know I am bless but still had a bit of a pity party going on inside my head. As I approached where this lady parked I prayed for strength to stop and wisdom to know what to say. God showed me he took care of it all.</em></strong></span><br />
<span style="color: #660000; font-family: Verdana, sans-serif;"><strong><em>So I pull in an park beside this car that looks like it should be in the junk yard that has a big sign HOMELESS. I introduced myself and shook the ladies hand. She apologized for being reluctant to shake my hand and did not want to explain why it was an issue just a ghost from the past. I without even thinking (totally a God thing) sat down next to her car on the pavement sitting Indian style so I could hear her better without the traffic noise. It was so incredible. This woman had the JOY of God in her. She had a radiant smile even when telling me her story. Very into the Bible and God this woman is.</em></strong></span><br />
<span style="color: #660000; font-family: Verdana, sans-serif;"><strong><em>Her story is this: She asked her husband to let God into their lives and he was not a Christian so he divorced her. She has four children and then became ill. The doctors do not know what she has but fear it may be bone cancer. She lost her job because she was ill so much of the time and of course then lost her insurance. She had no money and needed help for her children so she called her ex-husband to see if he could help until she could get back on her feet. Instead he obtained a lawyer and because she could not provide for the children he now has sole custody. He then moved to Pennsylvania (they were from another State) so the kids would not be influence by their mother (primary purpose I feel was to keep her from talking about God). She drove here 4 months ago in her beat up little car to be where she could at least see her children. She eats and sleeps in this car. It has no heat and a cracked windshield. It eats oil like M&Ms. </em></strong></span><br />
<span style="color: #660000; font-family: Verdana, sans-serif;"><strong><em>We talked for 1 1/2 hours but it seemed like only a few minutes. She went on and on about the love of God, the joy we are going to have in Heaven, and how important it is to love one another. One man stopped and had picked tomatoes and cucumbers from his garden for her. She was thrilled and then handed me some, I declined but she insisted that I take some as they would spoil before she could eat them all. Then she shared her favorite recipes with me. She is such an enthusiasticjoyful person. </em></strong></span><br />
<span style="color: #660000; font-family: Verdana, sans-serif;"><strong><em>Another young man with tattoos stopped and gave her some money and kept apologizing that he did not have more for her (I lost my stereotype about tattoos and the people who have them in one second). Another couple stopped just to talk to her. And the third man stopped and listen to her praise God and he gave her $20. She was thrilled because now she had enough money to get her Pennsylvania plates and would not be fined by the police.</em></strong></span><br />
<span style="color: #660000; font-family: Verdana, sans-serif;"><strong><em>I offered to have her come sleep in a warm cozy bed at my house. She declined 1) because she did not know me and explained you learn to be safe and 2) I have a dog and she is deathly allergic to dogs and cats. I was totally humbled by hearing this woman's story and embarrassed that I had been whining about my blessed life. God does teach us humility.</em></strong></span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif;"><strong><em>This woman kept praising God for everything. I thought of her circumstances and thought, " I would be a basket case". But her she was singing God's praises. I was whining about my great life and she has nothing and praises God in every sentence and with a smile on her face and a twinkle in her eye. She is such a champion. Wow, I would love to have that kind of love for God. How about you."~~</em></strong></span><span style="color: #660000; font-family: Verdana, sans-serif;"><strong><em>Nancy Rogers</em></strong></span></div>
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<br /><strong><span style="color: #20124d; font-family: Verdana, sans-serif;">Incredible. We all have struggles in our lives. Some of us just know how to pick ourselves up better than others. A lesson to be learned here. Nancy is an inspiration in herself and yet she finds inspiration in others, all through the love of God. My pity party is done for a while. I lift my troubles back up to the Lord. I will open my eyes and my heart for all the inspirations that surrounds me. I have seen them too, just not acknowledged them as I should.</span></strong></div>
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<strong><span style="color: #20124d; font-family: Verdana;"><a href="http://youtu.be/jFg_8u87zT0">http://youtu.be/jFg_8u87zT0</a></span></strong></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-4432785581573865822011-08-11T20:02:00.000-06:002011-08-11T20:02:50.033-06:00cruel joke<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span closure_uid_lgcqas="152" style="color: #20124d; font-family: Verdana, sans-serif;">I am sitting here trying to decide on what MS is. Is it a disease or just a very cruel joke. My conclusion leads me to think that it is the latter. At least for me, every once in a while, it gives me this little glimmer of hope; a little taste of what life used to be. How I used to dance around when I cleaned the house. I used to tend to my little flower garden. How I could window shop for hours. How I could clean for hours. Make a nice meal for my family. Go to the grocery store on my own. Then just when I think that I am going to be nearly normal again, it all starts slipping away again. </span></strong><br />
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<strong><span closure_uid_lgcqas="152" style="color: #20124d; font-family: Verdana, sans-serif;">I start getting clumsy, my coordination isn't quite right, my legs don't cooperate, my words aren't following what my brain is trying to say. Now my right side of my body is getting all uncoordinated and weak too. Seizures are back. New seizure meds making me loopy. I am overwhelmed and exhausted. I am tired of taking a shot everyday that makes me feel like getting stung by a bee. Some days I cry like a child and my poor hubby just doesn't know what to do about it.</span></strong></div>
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<strong><span style="color: #20124d; font-family: Verdana;">Read an article the other day on Annette Funicello and boy that sure didn't lift my spirits any. She is basically in a vegetative state. I never want to be to that point. I pray to God that I never get to that point. God bless her. I hope that she is not suffering.</span></strong></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-46368334137065167992011-07-20T19:26:00.000-06:002011-07-20T19:26:37.986-06:00New Study on Cost Effectiveness of MS Therapies : National MS Society<strong>The Disease Modifying Drugs for MS are so expensive. I am on Copaxone and before I used the VA, my monthly copay with insurance was $250. It was outrageous. I can't see how anyone affords this. This is just one of my medications. Here is an article that talks about the cost and effectiveness:</strong>
<a href="http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=5294">New Study on Cost Effectiveness of MS Therapies : National MS Society</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-38246000512779579682011-07-17T11:44:00.000-06:002011-07-17T11:44:57.227-06:00Hope Endures<strong><span style="color: #0c343d; font-family: Verdana, sans-serif;">Well, I kind of liked the video I posted last week, so I thought I would do another one today.</span></strong><br />
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<strong><span style="color: #0c343d; font-family: Verdana, sans-serif;">This one shows that the right side of my face is not working as it used to. The muscle symmetry is missing. It is weird how the nerves cross at the base of the head. So like me, if you have problems using your left leg and left arm, then it is actually the right side of the brain that is most affected. </span></strong><br />
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<strong><span style="color: #0c343d; font-family: Verdana, sans-serif;"> This is evident by the right side of the face being affected. Whenever I have any relapses, my right vision is affected along with muscle control on the right side of my face. My left leg starts to drag and my left foot drop becomes more profound. My left hand loses coordination to the point I can't even tap my fingers together rythmically.</span></strong><br />
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<strong><span style="color: #0c343d; font-family: Verdana, sans-serif;">If you close your eyes, hold out your arms, you should be able to touch your nose with each hand with no problem. I can no longer do that with my left side. Proprioception is the bodies ability to know where any anatomical part of the body is as well as sensations. </span></strong><br />
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<strong><span style="color: #0c343d; font-family: Verdana;">I made this video of me singing (not great), but if you notice, the right side of my face does not react as the left side does. It used to have symmetry, so this is not my normal. Well, I guess it is my new normal. Anyway, hope it brings you a little joy, probably most likely through laughter :o)</span></strong><br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dy1oeOkij64xzgVlWnAwQ6OIVaGjzN5ttIziru1_RhZ7WMFKKPVDa5bdE5OH-N1G9Sc82Nfa2QM9fo7CgzgUg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-56808813653998418662011-06-28T18:20:00.000-06:002011-06-28T18:20:07.787-06:00Letter to God<div dir="ltr" style="text-align: left;" trbidi="on">
<span><iframe align="left" frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=msandda-20&o=1&p=8&l=bpl&asins=B003NKU9AK&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="align: left; height: 245px; padding-right: 10px; padding-top: 5px; width: 131px;"></iframe></span><span style="color: blue; font-family: Verdana, sans-serif;"><strong>Dear Heavenly Father,</strong></span><br />
<strong><span style="color: blue; font-family: Verdana;">I wanted to start by thanking You for all the miracles in this world that we often fail to see. I try to remember that sometimes we are blind to all the wonders that You have surrounded us with. I ask that you help open up my eyes so that I don't lose sight of everything that You have given us, as well as the greatest sacrifice You gave through your son Jesus.</span></strong><br />
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<strong><span style="color: blue; font-family: Verdana;">I wanted to ask you to give knowledge, wisdom and insight to the medical providers who take care of those people with Multiple Sclerosis. Help them find a cure for this ravaging disease. Help them understand that each person with this disease is just that, a person. Help them see us for who we are and not the label of the disease. Help them treat us as such. </span></strong><br />
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<strong><span style="color: blue; font-family: Verdana;">There are so many people who are struggling with coping with MS, I ask that you give each and everyone of them, including myself, the perseverance we to overcome the obstacles that come in our way. I ask that you give the caregivers, loved ones, mothers, fathers, sisters & brothers the patience and understanding to help us through this.</span></strong><br />
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<strong><span style="color: blue; font-family: Verdana;">I can not imagine all the struggles that you hear about on any given moment of any given day. Today I just wanted the world to know that I am asking you for all of the above as well as help in understanding how I am going to help others when there are times that I can't even help myself. Please give me guidance. Please help me heal both physically, spiritually and emotionally from what MS is doing to me. Please heal others who are suffering as well.</span></strong><br />
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<strong><span style="color: blue; font-family: Verdana;">I love you.</span></strong><br />
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<strong><span style="color: blue; font-family: Verdana;">Lisa</span></strong><br />
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</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1210982733257775690.post-35519985229735524962011-06-08T20:47:00.000-06:002011-06-08T20:47:18.877-06:00Pain<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><em><span style="color: #20124d;">Pain has been such an issue lately. I hurt from head to toe. I was or am weaning myself off of the amytriptilline, which I take for pain control, but I hurt so bad. It's weird how this pain is so different than the pain you experience when you stub your toe or a paper cut on your finger. My pain is aching, flu-like pain. Also just my husbands touch on my arm sends off intense pain signals. I don't know what to do.</span></em></strong><br />
<strong><em><span style="color: #20124d;">I think I may increase my dose again, but I am nervous. I think this medicine might be the cause of my "seizures" that I was diagnosed with last month. I have to choose from the lesser of two evils I suppose.</span></em></strong><br />
<strong><em><span style="color: #20124d;">Today I went outside and tended to my flowers. A few years ago my flower garden would have been so full of beautiful blooms. This years garden looks very sparse, sad and pathetic, but I need to keep whatever I can going. After the sunset, I pulled a few weeds, and now I am completely wiped out. My pain is everywhere now and so intense.</span></em></strong><br />
<strong><em><span style="color: #20124d;">Maybe, one day I will have a beautiful garden again.</span></em></strong><br />
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<a href="http://www.youtube.com/user/pianki?blend=1&ob=5">http://www.youtube.com/user/pianki?blend=1&ob=5</a><br />
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</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-3081687239800436312011-05-31T20:34:00.002-06:002011-05-31T20:37:10.591-06:00Avoidance<div dir="ltr" style="text-align: left;" trbidi="on">
<iframe align="left" frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=msandda-20&o=1&p=8&l=bpl&asins=B004UE36QW&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="align: left; height: 245px; padding-right: 10px; padding-top: 5px; width: 131px;"></iframe><span style="color: black;"><strong>MIA for a while. I have been avoiding my blog because I don't feel particularly inspirational at this point. Having a bad few months and can't seem to climb back out of it fast enough. 2 day stint in the hospital where I was diagnosed as having seizures on top of everything. They started me on a seizure medication Keppra where I was supposed to take 500mg twice a day and then after 2 weeks move up to 1000mg twice a day. Well I took it for a week and a half. Let me list the side effects and you can deduce why I stopped: Weakness, dizziness, drowsiness, loss of balance...... Everything I already have plus 10x worse. I could barely walk a few feet without losing the ability to lift my legs up very well. It sucked. Haven't told my doctor this yet. Not looking forward to that.</strong></span><br />
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<span style="color: black;"><strong>Where to find inspiration. I am at a loss. I seem to be knocked down a lot lately, but never knocked completely out. I get back up, but with a lot of help. My husband is the love of my life. He stands by me. He hugs me so tight through my tearful sessions. He opens doors, holds me up, goes out of his way to make sure I have everything I need. I could not be any more blessed. Loving husband, wonderful family and kids, friends whom I may not see very often, but I know they love me as I love them. The good Lord whose faith in me never waivers even when mine might falter a little. Well I guess there is the inspiration I was looking for. Sometimes I try to look so far ahead that I fail to see what is already here.</strong></span><br />
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<span style="color: black;"><strong>Still it is so hard not to ask why me? I am not old. I want to be able to do everything like I could before becoming "sick". I love summer, but don't get to enjoy it. Heat makes all the neurons go hay-wire and can't function. I want to walk around the neighborhood, but can't. I want to hike in the mountains, but I can't. I want to be a floor nurse, but now am confined to an office (grateful to be able to work, even if it's only for a few hours). I know that I am supposed to focus on what I can do, but it's hard not to miss what you could do. I want this all to be a bad dream. Somebody pinch me and wake me up. I don't like this. I actually hate this. Cruel cruel disease.</strong></span><br />
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<span style="color: black;"><strong>Well that put a damper on things now didn't it. What's that saying? <em>Hope springs eternal.</em></strong></span><br />
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<a href="http://www.youtube.com/watch?v=1CSVqHcdhXQ"><span style="color: black;"><strong>http://www.youtube.com/watch?v=1CSVqHcdhXQ</strong></span></a><br />
<span style="color: black;"><br /><strong></strong></span></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1210982733257775690.post-20519319461699938052011-04-26T21:43:00.000-06:002011-04-26T21:43:40.180-06:00pondering<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: #20124d; font-family: Verdana, sans-serif;">Hmmm. I am trying to figure out a correlation between my periods of sick and environmental factor. I have gotten colds that don't really present like colds. I get a low grade fever and then muscle aches, very slight cough. Every time my MS symptoms go crazy, I have these "colds". </span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">I am also wondering about spatial orientation and balance. When I am at home, I can walk better for the most part. My balance is a little better. When I go out into any kind of public place it seems my world because more topsy turvy. Almost like sensory overload. I get dizzy when there is too much going on and I am easily overwhelmed.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">Then there is multi tasking. It seems not to long ago I could do multiple things at the same time, no problem. Now I can barely focus on one simple task. I can't sing and type. Weird statement, but I noticed that today. </span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">Then there is the memory. I am so forgetful. I have such a problem with remembering the simplest things, like turning off lights and forgetting to actually turn on the washing machine. I have been forgeting to put laundry detergent in.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">BTW, my little dramatic moment is quite over. I am almost back to my previous baseline which makes me happy. I am feeling well enough to go with my beautiful daughter tomorrow to find her very first prom dress. I am very excited. I hope I can last the whole waiting for a teenager to actually make a decision on her dress. Oh boy. I am already tired just thinking of it.</span></strong><br />
<strong><span style="color: #20124d; font-family: Verdana;">Hope that everyone out there with this disease finds their peace. Today I have mine back.</span></strong><br />
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<a href="http://www.youtube.com/watch?v=Dn7pWm4i0ZU">http://www.youtube.com/watch?v=Dn7pWm4i0ZU</a><br />
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<span><iframe align="left" frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=msandda-20&o=1&p=8&l=bpl&asins=B000050HZO&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="align: left; height: 245px; padding-right: 10px; padding-top: 5px; width: 131px;"></iframe></span><br />
</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-29378460728813102172011-04-18T18:57:00.000-06:002011-04-18T18:57:22.937-06:00new Rx?<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Scripps closer to multiple sclerosis knockout</strong></span><br />
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<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Published on April 18, 2011 by admin · No Comments </strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>By Jeff Ostrowski</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Palm Beach Post Staff Writer</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
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<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>JUPITER — Researchers at Scripps Florida say they’ve found a way to stop multiple sclerosis in mice.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>In a study published this week in the journal Nature, Scripps scientists say they’ve developed a compound that stops MS by knocking out TH17, a type of white blood cell that malfunctions in patients with MS and other autoimmune diseases such as rheumatoid arthritis and lupus.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>If it works in humans, the new treatment, known as SR1001, would have a couple of advantages over existing MS drugs, said Tom Burris, a professor in the Department of Molecular Therapeutics at Scripps Florida.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>First, it could be taken as a pill rather than injected. Second, the compound would attack only TH17 cells while sparing other disease-killing cells.</strong></span><span style="font-family: Verdana, sans-serif;"></span><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>“Right now, the treatments that are out there suppress the entire immune system, and that comes with a lot of side effects,” Burris said.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>It’s unclear whether the treatment is a cure or simply stalls the disease, he said.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>An estimated 400,000 Americans have MS, according to the Multiple Sclerosis Foundation in Fort Lauderdale. MS, which prevents nerve cells in the brain and spine from communicating, is most commonly diagnosed in women between 20 and 40.</strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>“The hunt for a new MS drug is very urgent,” said Kasey Minnis, director of operations at the Multiple Sclerosis Foundation. “There’s no medication that’s super-effective in all people with MS.”</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>The new treatment is promising enough that it has garnered interest from drug companies, Burris said.</strong></span><span style="font-family: Verdana, sans-serif;"></span><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>“We have a lot of interest from biotech and pharma companies, and we’re trying to strike a deal with someone,” he said.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Scripps could license SR1001 to one of those companies within a few months, Burris said.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>TH17 cells produce interleukin-17, a natural molecule that can cause inflammation.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>“In these autoimmune diseases, the body is tricked into attacking itself,” Burris said.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>When scientists blocked signals from the TH17 cells in mice, their MS disappeared.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Dr. Daniel Kantor, an MS specialist in Ponte Vedra Beach, said the treatment could work, but he also urged caution. MS is so much easier to treat in mice than in humans, he said, that researchers sometimes joke that rattling the cage will cure the disease in laboratory animals.</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>“Even if it’s really going to work in the end, it will take years before it’s used in humans,” Kantor said. “Animal data is different from human data. Until you have large human studies, you never know.”</strong></span><span style="font-family: Verdana, sans-serif;"><br /><strong><span style="color: #20124d;"></span></strong></span><br />
<span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Scripps’ work was supported by National Institutes of Health grants totaling $3.6 million.</strong></span><br />
<strong><span style="color: #20124d; font-family: Verdana;"></span></strong><span style="font-family: Verdana, sans-serif;"><br /> </span><span style="color: #20124d; font-family: Verdana, sans-serif;"><strong>Article source: <a href="http://www.palmbeachpost.com/money/scripps-closer-to-multiple-sclerosis-knockout-1408926.html?cxtype=rss_money_16350">http://www.palmbeachpost.com/money/scripps-closer-to-multiple-sclerosis-knockout-1408926.html?cxtype=rss_money_16350</a></strong></span><br />
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<strong><span style="color: #20124d;"></span></strong></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-65598587592119399212011-04-16T14:24:00.000-06:002011-04-16T14:24:56.182-06:00funk<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="color: #4c1130; font-family: Verdana, sans-serif;">So this post was supposed to be an uplifting blog about my life with MS. I find myself in the midst of a funk and am having a very hard time lifting myself up let alone anyone else.</span><br />
<span style="color: #4c1130; font-family: Verdana;">It's been a little over a week that my symptoms started to come back with a vengeance. I am frustrated. I am angry. I don't like this feeling I have right now. I feel so alone in this. My husband tries to understand but in many small comments (unintentional) I know he doesn't. I have a feeling latelty that there is no hope. No one to help me. I feel isolated in my home sometimes. I hate this disease and I am learning to hate who I am. I hope this feeling will pass soon. </span><br />
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<span style="color: #4c1130; font-family: Verdana;">I keep lifting up my probl</span><span style="color: #4c1130; font-family: Verdana;">em to God, but maybe I don't know how to let go. I have pain in my heart and pain in my body. I am tired of watching life pass me by and not being able to participate. Sometimes I think..........well it's not what I want to think.</span><br />
<span style="color: #4c1130; font-family: Verdana;">I need some help. I don't know who or what or where. Pray.</span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-45459473837062022992011-04-08T16:54:00.001-06:002011-04-08T16:55:53.727-06:00invisible symptoms<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: purple;">Invisible Symptoms in MS - Part 1</span></strong><br />
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<a href="http://bit.ly/MSLOinvisiblesymptoms">http://bit.ly/MSLOinvisiblesymptoms</a><br />
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<strong><span style="color: purple;">Invisible Symptoms in MS - Part 2</span></strong><br />
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<a href="http://bit.ly/MSLOinvisiblesymptoms2">http://bit.ly/MSLOinvisiblesymptoms2</a><br />
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<strong><span style="color: #20124d; font-family: Verdana, sans-serif;">I think that this is one of the hardest things about having MS. People will tell you that you look great, but the truth of the matter is that physically you are struggling. I get told all the time that I look better or something along the line, when I am so fatigued, hurting, my mind is a jumble, daily tasks look like an enormous mountain to climb. There are days when I almost feel as good as I look, but inevidely, the invisible symptoms sneak back. Today they came back. </span></strong></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1210982733257775690.post-74450115486708277952011-03-20T20:33:00.000-06:002011-03-20T20:33:54.232-06:00Second thought<div dir="ltr" style="text-align: left;" trbidi="on">
<span><iframe align="left" frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=msandda-20&o=1&p=8&l=bpl&asins=B00121753G&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="align: left; height: 245px; padding-right: 10px; padding-top: 5px; width: 131px;"></iframe></span><strong><span style="color: #274e13; font-family: Verdana, sans-serif;">When I was younger I took so much for granted. I was always one of those who walked super fast everywhere I went never once thinking that it would come to an end. I drove my car to wherever even if it was in walking distance. I didn't think twice about my ability to run, ride a bike or dance. In my mind, I didn't even know that I took these things for granted. Never giving it a second thought.</span></strong><br />
<strong><span style="color: #274e13; font-family: Verdana;">Throughout my nursing career I have taken care of many people who lost some of their natural abilities. I always felt sorry for them, but never truly understood the emotional toll that they were or went through. I took good care of them for my 12 hours, empathized or so I thought, with their situation, but at the end of the day, I got to walk out of that building on my own to feet. </span></strong><br />
<strong><span style="color: #274e13; font-family: Verdana;">I guess what I am trying to say is walk, run, skip, jump, hop, twist and shout like there is no tomorrow. Go swimming, skiing, hiking, ride your bike, and enjoy the outdoors, it is a wonderful gift to be able to move your body. Do the cotton-eyed joe, the electric slide, the cha cha slide, the chicken dance, and of course we can't forget the Macarena.</span></strong><br />
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<strong><span style="color: #274e13; font-family: Verdana;"><a href="http://www.youtube.com/watch?v=bmKhEGiNshA">http://www.youtube.com/watch?v=bmKhEGiNshA</a></span></strong><br />
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