tag:blogger.com,1999:blog-65280916237073803632024-03-13T22:28:42.331-07:00MS and DawnMS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-6528091623707380363.post-63204679918772439212013-02-09T05:22:00.001-08:002013-02-09T05:22:40.822-08:00That dreaded phone call...Jeff here. We haven't done very well at documenting whats been happening. Basically, it's been a no news is good news kinda few months or in the case of the blog.. year! Health and MS wise, things looked to be going great. Dawn has focused on her health over the last 6 months and has been feeling great. She quit smoking (yeah! :) ), started eating better and tracking her food. We both started started working out 3 to 4 times a week and joined a gym. Her energy level has went up, she is much stronger and her over all attitude has been wonderful. She still gets the numbness after a work out but we have accepted that and know it will be there. We had her yearly MRI and check up in January. We talked to her MS Doctor about the new medications coming out. I cant tell you which ones or what they are other than its a pill and we wont have to do injections ( :) )Were excited to give a few of them a try. They are still very new so we'll be breaking new ground for our office as soon as we get the green light to try one. We discussed how the copaxone has been going. Over all, we liked the copaxone. No injection problems. No viable side affects.<br />
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Yesterday, we got the phone call that the MRI and blood work results were back. Blood work looked great. Most of the deficiencies we were watching are better. One vitamin, B 12, was low but can be adjusted with a another pill easy enough. As far as the MRI, No major changes to the lessons were detected. HOWEVER the brain tumor which was discovered when she was very first diagnosed year and years ago (1-2000 I believe) and has not been active since it was discovered... is active again. <br />
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Were not really sure what that means just yet. Im sure we will be having a follow up soon. So, look for another blog soon. Jeff "Dawmer299"http://www.blogger.com/profile/14200083063811434652noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-57421569190468022362012-08-01T18:45:00.000-07:002013-02-09T04:06:36.243-08:00So, its been a while!Since Dawn hasnt posted anything in a really long time.... I asked her if she would add me so I could post for her. For those of you who dont know me. Im Jeff, Dawns Dear Husband (Or DH as she refers to me on the internet). This year has been kinda crazy. Dawn's medicine - Betaseron, quit working and she started to have some relapse. We got with the Dr. and decided to try a different drug - Copaxone. Its veiwed by some as a step down but its one of the few MS drugs she hasnt tried... so why not! It was crazy actually getting her on it. We had all sorts of trouble getting it. After being off medication for about 5 months, we finally got everyone on the same page and the meds started showing up. Nothing new to report other than that. In this case... no news is good news! Until Next time!Jeff "Dawmer299"http://www.blogger.com/profile/14200083063811434652noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-34572261827257966082011-10-21T20:41:00.000-07:002011-10-21T21:07:37.656-07:00No I don't want a hugSeeing as I haven't blogged here for a while....I thought I should. <div><br /></div><div>Today I was introduced to MSHug, WOW that was painful. MSHug is a tightness in your chest, it can happen anywhere from below your rib cage down to your waist and has been know to occur as far up as your neck. It feels like something has grabbed a hold of your chest/body part (in this area) and is squeezing. Thank goodness this only lasted a few seconds while we were at lunch. </div><div><br /></div><div>The fatigue is still prevalent. Man I could really use a nap in the middle of the day, but that is not likely to happen. :) Besides headaches, dizziness and balance issues everything is GREAT! LOL</div><div><br /></div><div>I can say I am happy with the cooler weather coming on, because this helps eliminate some of the fatigue, even though it is still there. I just can not deal with extreme cold and extreme heat. The Myoclonus is still here...yah!! I am noticing it more and boy does it hurt to try and control it when I am in public. I already get the odd looks if I happen to stumble...I promise I have not been drinking!!! Could you image adding in twitching with that. </div><div><br /></div><div>I have my next appointment with my Neurologist in January, so we will see if there are any changes. It seems as each day, month go by...I feel worse, but I am trying to keep positive and fight this stupid disease.</div><div><br /></div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-48730766469893228852011-02-26T19:51:00.000-08:002011-02-26T20:27:46.839-08:00This is your brain on MS<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-6m0V1K1jsfk/TWnKTVDjELI/AAAAAAAAACQ/qLX426XUSBE/s1600/brain_mri_transversal_t2_003.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 200px;" src="http://4.bp.blogspot.com/-6m0V1K1jsfk/TWnKTVDjELI/AAAAAAAAACQ/qLX426XUSBE/s200/brain_mri_transversal_t2_003.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5578212046893420722" /></a>Let me start this by saying this is not my brain image. The processes of getting my records is well, tedious and I wanted to update my blog prior to having to wait. So, I have "borrowed" an image from the internet and hope that I do not get sued. :) <div><br /></div><div>So, the doctor's appointment was pretty boring for the most part, but we did find 2 more lesions. **note: let me preface this by saying I am not a doctor nor do I play one on tv** I choose to educate myself on this stupid disease so that I am aware of what is happening to me. The first lesion (upper left region) is located close (really) close to the frontal lobe. For those who are interested, your frontal lobe controls "planning, emotional control center and home of your personality, motor functions, problem solving, memory..etc <a href="http://www.neuroskills.com/tbi/bfrontal.shtml">you can read more here.</a> So, my doctor and I agreed that it was a good thing it wasn't there. BUT it is VERY close. :( Now this is what is causing my myoclonus, which is basically involuntary twitching. I noticed a few months ago that my left arm and neck would jerk randomly. (think when your eye twitches). </div><div><br /></div><div>Next, in the lower right corner of the picture is another small lesion in the Occipital Lobe which processes visual data. So naturally my doctor questioned me about vision problems. Which I have had none (that I recall). I do get the squiggly lines in my vision, but those have been there for years and my eye doctor told me it was from having dry eyes and a stigma. Now occasionally I see (what seems like) movement in my peripheral vision (so maybe I see dead people) who knows. :) So, we are keeping an eye (sorry for the pun) on that lesion. </div><div><br /></div><div>So whats all this mean. Well, in my doctor's mine he wanted to put me on a steroid treatment right away and I basically told him "NO"! He agrees that these symptoms could go away by themselves and that is what we are going to do. Now he did prescribe me <a href="http://http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000635">clonazepam</a>; this medicine is an anti-seizure med to help stop the muscle jerks. (so far so good). So now is a waiting game to make sure it works and the lesion disappear. I have another appointment in about 6 months follow another MRI to see that there are no more lesions and that these lesions have gone away. I will keep you updated. </div><div><br /></div><div><br /></div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-58638997916808374362011-02-06T11:12:00.000-08:002011-02-06T11:31:20.022-08:001st MRI of 2011I had my first MRI of 2011. Will not know any results until later. I really hate MRI's. They have to drug me up on Zanex (Xanex) to stick me in this tight tube for 2 hours listening to pinging and banging noises. Just so they can look at my brain. Then I have to wait for any information from my doctor, so I just have to sit and wait. Are there more lesions, are there less? Where are they, are they causing my fatigue, pain, numbness or memory loss??<div><br /></div><div>No matter what, I just continue to live my life day by day. I am not a religious person but I always rely on the statement that: "god does not give you anything you can not handle." This disease has taught me patience and strong will. No matter how much someone tries to understand, unless you have to live with this, you never will. So, just because you see a smile on my face, does not mean I am doing okay. My mother has taught me to hide my feelings, because lets face it, most people do not care "how you really are." </div><div><br /></div><div>I worry everyday that I will wake up and not be able to walk or see or hear or talk. Will I be able to write or communicate? What will people think if I have to start walking with a cane? I don't want people to feel sorry for me, I just want understanding. Not everyone with this disease is feeble. Just because I can't remember a word, or a name doesn't make me stupid. I don't want to see pity and I don't want to be ignored due to ignorance on someone else's part. I am me and I will ALWAYS be me. </div><div><br /></div><div>On a lighter subject I am totally going to try and get a copy of my MRI. I will totally post it here, look for the title: "This is your brain on MS" :)</div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-33069212964682572592011-01-28T22:18:00.000-08:002011-01-28T22:34:39.737-08:00Geez time flies....<img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://2.bp.blogspot.com/_NpaU_eK0How/TUOyiabbgjI/AAAAAAAAACE/szRYIc7vVHY/s200/gizzy.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5567489868639732274" /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NpaU_eK0How/TUOx50H2uAI/AAAAAAAAAB8/FrDxvpyXYfI/s1600/newyears.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="http://3.bp.blogspot.com/_NpaU_eK0How/TUOx50H2uAI/AAAAAAAAAB8/FrDxvpyXYfI/s200/newyears.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5567489171162314754" /></a><br />When your having fun.<div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>Went and spent our New Years at a friends house and had an awesome time. It's always good to be able to spend time and relax with friends. Jeff and his "pimp" hat made their debut. (rolling eyes as I type this. LOL) But all in all good times were had by all.</div><div><br /></div><div>My mom was out of town visiting my brother in Georgia, so when went off to Jeff's parents house for Christmas. We unfortunately had to leave the dog behind and we were welcomed with a Christmas Morning picture of her from our Friends. (thanks guys :) ). I love spending anytime out there with his parents. I get the best rest and am the most relax when we are out there. </div><div><br /></div><div>All and all everything seem to be going okay. Just now getting over a cold (or whatever you want to call it). Some coughy (I know, not a real word) thing. Still coughing, but feeling better. Went to see the MS doc on Monday, and had my anemia checked due to dizziness and falling. But was told it looks good. I am getting scheduled for an MRI sometime this coming week due to Myoclonus become more prevalent. They thought it was from my anemia, but since my numbers are good, they think there could be more lesions. Oh well we will see. </div><div><br /></div><div>I wonder if I can get a copy of my MRI sent to me so I can post it??? HMMM!! I am totally going to ask my Doc. :)<br /><div><br /></div><div><br /></div><div><br /><div><br /></div><div><br /></div><div><br /></div></div></div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-3458083267848850962010-09-01T17:09:00.000-07:002010-09-01T17:16:27.243-07:00New Chapter<span class="Apple-style-span" style=" ;font-family:'times new roman', 'new york', times, serif;"><p class="MsoNormal" style="margin-top: 0in; margin-right: 0in; margin-bottom: 0.0001pt; margin-left: 0in; font-family:'Times New Roman';font-size:12pt;"><span style="font-family:Times New Roman;"><span class="Apple-style-span" style="font-size: medium;">Sometimes it is hard to restart, but when the time comes you know it. I have decided to start over with the </span><span class="yshortcuts" id="lw_1283386207_0"><span class="Apple-style-span" style="font-size: medium;">weight loss plan</span></span><span class="Apple-style-span" style="font-size: medium;">. I have a dress that I need to fit into before October for a friends wedding. It is not like I</span><span><span class="Apple-style-span" style="font-size: medium;"> </span></span><span class="Apple-style-span" style="font-size: medium;">have gobs of weight or inches to lose to fit into it, but it is the principle of it. It’s about feeling good about yourself and being able</span><span><span class="Apple-style-span" style="font-size: medium;"> </span></span><span class="Apple-style-span" style="font-size: medium;">to walk with your head up.</span></span></p><p class="MsoNormal" style="margin-top: 0in; margin-right: 0in; margin-bottom: 0.0001pt; margin-left: 0in; font-family:'Times New Roman';font-size:12pt;"><span style="font-family:Times New Roman;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></span></p><p class="MsoNormal" style="margin-top: 0in; margin-right: 0in; margin-bottom: 0.0001pt; margin-left: 0in; font-family:'Times New Roman';font-size:12pt;"><span style="font-family:Times New Roman;"><span class="Apple-style-span" style="font-size: medium;"> </span></span></p><p class="MsoNormal" style="margin-top: 0in; margin-right: 0in; margin-bottom: 0.0001pt; margin-left: 0in; font-family:'Times New Roman';font-size:12pt;"><span style="font-family:Times New Roman;"><span class="Apple-style-span" style="font-size: medium;">I discovered about a month ago the Anti-Anxiety medication I was on was causing me to gain weight and to not be able to lose it. When I discovered this, I was extremely upset. I had recently started an exercise regime about 2 months ago, P90X. You would think that all the work that was being put into this routine, I would have lost at least 1 pound. I did not lose anything. Nothing. Nada. This was extremely frustrating and caused me to stop. Now that I have been off of the medication for about 2 weeks, I have already dropped 9 pounds!!! Talk about validation and encouragement. So since it is the beginning of the month and I know that I can do this, I will be starting back on P90X and watching what I eat. I am excited about what this new page in my life will be bringing and encourage by the weight lose to know that I can do this. </span></span></p><p class="MsoNormal" style="margin-top: 0in; margin-right: 0in; margin-bottom: 0.0001pt; margin-left: 0in; font-family:'Times New Roman';font-size:12pt;"><span style="font-family:Times New Roman;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></span></p><p class="MsoNormal" style="margin-top: 0in; margin-right: 0in; margin-bottom: 0.0001pt; margin-left: 0in; font-family:'Times New Roman';font-size:12pt;"><span style="font-family:Times New Roman;"><span class="Apple-style-span" style="font-size: medium;"> </span></span></p><p class="MsoNormal" style="margin-top: 0in; margin-right: 0in; margin-bottom: 0.0001pt; margin-left: 0in; font-family:'Times New Roman';font-size:12pt;"><span style="font-family:Times New Roman;"><span class="Apple-style-span" style="font-size: medium;">There are other crossroads in my life I am also working on. It is time to take a look and focus more on getting bills paid off, instead of just walking around with my head in the clouds. It’s also time to purge my life of all the clutter, weather its people or things. I have started distancing myself from the bad vibes and realizing there is no need to be so negative about situations or other people. Also the house purge will begin. I have discovered and decided (realized) that you can’t take anything with you once you are gone, so why do we live our lives for things? Anything that can be sold, will be sold. Anything that can be donated with be donated. Anything that </span><b><u><span style="font-weight: bold; "><span class="Apple-style-span" style="font-size: medium;">needs </span></span></u></b><span class="Apple-style-span" style="font-size: medium;">to be thrown away will be thrown away. I mean I took a serious, critical look around my house and discovered that I have things that I don’t even like. Why? I asked myself. Why? I believe freeing myself from such clutter will help regenerate my life, my soul.</span></span></p><p class="MsoNormal" style="margin-top: 0in; margin-right: 0in; margin-bottom: 0.0001pt; margin-left: 0in; font-family:'Times New Roman';font-size:12pt;"><span style="font-family:Times New Roman;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></span></p><p class="MsoNormal" style="margin-top: 0in; margin-right: 0in; margin-bottom: 0.0001pt; margin-left: 0in; font-family:'Times New Roman';font-size:12pt;"><span style="font-family:Times New Roman;"><span class="Apple-style-span" style="font-size: medium;">I am so excited about this new chapter that I am starting and can not wait to begin on my journey!!</span></span></p></span>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com2tag:blogger.com,1999:blog-6528091623707380363.post-33152871490384999962010-07-10T09:18:00.000-07:002010-07-10T09:38:48.279-07:00Sorrow<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_NpaU_eK0How/TDidelip4CI/AAAAAAAAABo/G5FIQyxXsvI/s1600/sorrow.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 132px; height: 88px;" src="http://2.bp.blogspot.com/_NpaU_eK0How/TDidelip4CI/AAAAAAAAABo/G5FIQyxXsvI/s200/sorrow.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5492312894377418786" /></a>I came to terms with this disease years ago. I knew that hours, days, weeks would come that I would not be able to do certain things. But it still hurts. I spent the evening with some friends at a BBQ and some swimming, got to sleep in this morning, yet I feel like I have been hit my a freight train. I really need to get off this couch and just do anything, but I can't.<div><br /></div><div>When something major happens is your life you go through stages. (Denial, Anger, Bargaining, Depression, & finally Acceptance.) I have been through these, I feel like I may have skipped some. Anger, depression and acceptance I remember. There was no denial, there was just too much "proof". I feel like I have been bargaining for years on a daily basis with this disease. There is so much stuff to do and so little time to do it, it seems. I feel bad when I can't do things with friends or family and I feel like I miss out on so much. Maybe I will get off this couch sometime today.</div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com1tag:blogger.com,1999:blog-6528091623707380363.post-16858959018058931262010-07-08T16:46:00.000-07:002010-07-08T16:51:43.881-07:00I'm EXHAUSTED!!!When someone asks me how I feel, it really just depends on the time of day. It is hard to describe to someone what you go through on a regular daily basis. I found this story years ago and I like to share it with others when they try to understand just how I am. I do not recall were it came from, but the story involves someone with Lupus, but anyone with a chronic disease can totally identify with this store. <div><br /></div><div>THE SPOONS</div><div><br /></div><div><span class="Apple-style-span" style="font-family: Arial; font-size: 13px; color: rgb(51, 51, 51); ">My friend asked what it felt like, not physically, to be sick. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.<br /><br />At that moment, the spoon theory was born. I quickly grabbed every spoon on the table. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. I explained that the difference in being sick and<a href="http://www.medhelp.org/posts/Multiple-Sclerosis/The-Spoon-Theory/show/330233#" class="kLink" target="undefined" id="KonaLink1" style="color: rgb(0, 108, 200) !important; text-decoration: underline !important; border-bottom-style: none !important; cursor: pointer; font-family: verdana; border-top-width: 0px !important; border-right-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important; border-top-style: none !important; border-right-style: none !important; border-left-style: none !important; border-top-color: transparent !important; border-right-color: transparent !important; border-bottom-color: transparent !important; border-left-color: transparent !important; background-image: none !important; background-attachment: initial !important; background-origin: initial !important; background-clip: initial !important; background-color: transparent !important; margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 0px !important; padding-left: 0px !important; text-transform: none !important; display: inline !important; font-variant: normal; top: 0px; right: 0px; bottom: 0px; left: 0px; outline-style: none; outline-width: initial; outline-color: initial; position: static; background-position: initial initial !important; background-repeat: initial initial !important; "><span style="color: rgb(0, 108, 200) !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; color:#006cc8;"><span class="kLink" style="border-top-width: 0px !important; border-top-style: none !important; border-top-color: initial !important; border-left-width: 0px !important; border-left-style: none !important; border-left-color: initial !important; border-right-width: 0px !important; border-right-style: none !important; border-right-color: initial !important; border-bottom-width: 1px; border-bottom-style: solid; border-bottom-color: rgb(0, 108, 200); padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 1px !important; padding-left: 0px !important; color: rgb(0, 108, 200) !important; background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: transparent; width: auto !important; float: none !important; display: inline !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; background-position: initial initial; background-repeat: initial initial; ">being </span><span class="kLink" style="border-top-width: 0px !important; border-top-style: none !important; border-top-color: initial !important; border-left-width: 0px !important; border-left-style: none !important; border-left-color: initial !important; border-right-width: 0px !important; border-right-style: none !important; border-right-color: initial !important; border-bottom-width: 1px; border-bottom-style: solid; border-bottom-color: rgb(0, 108, 200); padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 1px !important; padding-left: 0px !important; color: rgb(0, 108, 200) !important; background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: transparent; width: auto !important; float: none !important; display: inline !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; background-position: initial initial; background-repeat: initial initial; ">healthy</span></span><span id="preLoadWrap1" class="preLoadWrap" style="position: relative; "></span></a> is having to make choices, or to consciously think about things when the rest of the world doesn’t have to.<br /><br />The healthy have the luxury of choice, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire. For the most part, they do not need to worry about the effects of their actions.<br /><br />I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in <a id="term_2017544_1" class="highlight_link" href="http://www.medhelp.org/tags/show/13074/control" style="color: black !important; text-decoration: none; border-bottom-style: dotted; border-bottom-width: 1px; border-bottom-color: rgb(102, 102, 102); ">control</a> of taking away the spoons, then she would know what it feels like to have someone or something else being in<a id="term_2017544_2" class="highlight_link" href="http://www.medhelp.org/tags/show/13074/control" style="color: black !important; text-decoration: none; border-bottom-style: dotted; border-bottom-width: 1px; border-bottom-color: rgb(102, 102, 102); ">control</a>. <br /><br />I asked her to count her spoons: I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with.<br /><br />She counted out 12 spoons. She laughed and said she wanted more. I said no. I’ve wanted more "spoons" for years and haven’t found a way yet to get more. I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple; each one would cost her a spoon. </span></div><div><span class="Apple-style-span" style="font-family: Arial; font-size: 13px; color: rgb(51, 51, 51); "><br /></span></div><div><span class="Apple-style-span" style="font-family: Arial; font-size: 13px; color: rgb(51, 51, 51); ">When she jumped right into getting ready for work I <a id="term_2017544_3" class="highlight_link" href="http://www.medhelp.org/tags/show/18130/Cuts-and-puncture-wounds" style="color: black !important; text-decoration: none; border-bottom-style: dotted; border-bottom-width: 1px; border-bottom-color: rgb(102, 102, 102); ">cut</a> her off and took away a spoon. " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your <a href="http://www.medhelp.org/posts/Multiple-Sclerosis/The-Spoon-Theory/show/330233#" class="kLink" target="undefined" id="KonaLink2" style="color: rgb(0, 108, 200) !important; text-decoration: underline !important; border-bottom-style: none !important; cursor: pointer; font-family: verdana; border-top-width: 0px !important; border-right-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important; border-top-style: none !important; border-right-style: none !important; border-left-style: none !important; border-top-color: transparent !important; border-right-color: transparent !important; border-bottom-color: transparent !important; border-left-color: transparent !important; background-image: none !important; background-attachment: initial !important; background-origin: initial !important; background-clip: initial !important; background-color: transparent !important; margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 0px !important; padding-left: 0px !important; text-transform: none !important; display: inline !important; font-variant: normal; top: 0px; right: 0px; bottom: 0px; left: 0px; outline-style: none; outline-width: initial; outline-color: initial; position: static; background-position: initial initial !important; background-repeat: initial initial !important; "><span style="color: rgb(0, 108, 200) !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; color:#006cc8;"><span class="kLink" style="border-top-width: 0px !important; border-top-style: none !important; border-top-color: initial !important; border-left-width: 0px !important; border-left-style: none !important; border-left-color: initial !important; border-right-width: 0px !important; border-right-style: none !important; border-right-color: initial !important; border-bottom-width: 1px; border-bottom-style: solid; border-bottom-color: initial; padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 1px !important; padding-left: 0px !important; color: rgb(0, 108, 200) !important; background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: transparent; width: auto !important; float: none !important; display: inline !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; background-position: initial initial; background-repeat: initial initial; ">medicine</span></span></a>, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." <br /><br />I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her<a href="http://www.medhelp.org/posts/Multiple-Sclerosis/The-Spoon-Theory/show/330233#" class="kLink" target="undefined" id="KonaLink3" style="color: rgb(0, 108, 200) !important; text-decoration: underline !important; border-bottom-style: none !important; cursor: pointer; font-family: verdana; border-top-width: 0px !important; border-right-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important; border-top-style: none !important; border-right-style: none !important; border-left-style: none !important; border-top-color: transparent !important; border-right-color: transparent !important; border-bottom-color: transparent !important; border-left-color: transparent !important; background-image: none !important; background-attachment: initial !important; background-origin: initial !important; background-clip: initial !important; background-color: transparent !important; margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 0px !important; padding-left: 0px !important; text-transform: none !important; display: inline !important; font-variant: normal; top: 0px; right: 0px; bottom: 0px; left: 0px; outline-style: none; outline-width: initial; outline-color: initial; position: static; background-position: initial initial !important; background-repeat: initial initial !important; "><span style="color: rgb(0, 108, 200) !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; color:#006cc8;"><span class="kLink" style="border-top-width: 0px !important; border-top-style: none !important; border-top-color: initial !important; border-left-width: 0px !important; border-left-style: none !important; border-left-color: initial !important; border-right-width: 0px !important; border-right-style: none !important; border-right-color: initial !important; border-bottom-width: 1px; border-bottom-style: solid; border-bottom-color: initial; padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 1px !important; padding-left: 0px !important; color: rgb(0, 108, 200) !important; background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: transparent; width: auto !important; float: none !important; display: inline !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; background-position: initial initial; background-repeat: initial initial; ">legs</span></span></a>. Reaching high and low that early in the morning could actually cost more than one spoon. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every <a id="term_2017544_4" class="highlight_link" href="http://www.medhelp.org/tags/show/130100/Little-Noses-Decongestant" style="color: black !important; text-decoration: none; border-bottom-style: dotted; border-bottom-width: 1px; border-bottom-color: rgb(102, 102, 102); ">little</a> detail needs to be thought about. <br /><br />I told her she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons".<br /><br />You do not want to run low on "spoons", because you never know when you truly will need them. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long.<br /><br />She was forced to make choices and think about things differently. She had to choose not to run errands, so that she could eat dinner that night. <br /><br />Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I need to think about the weather, my <a id="term_2017544_5" class="highlight_link" href="http://www.medhelp.org/medical-information/show/2315/Temperature-measurement" style="color: black !important; text-decoration: none; border-bottom-style: dotted; border-bottom-width: 1px; border-bottom-color: rgb(102, 102, 102); ">temperature</a> that day, and the whole day's plans before I can attack any one given thing.<br /><br />It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons". </span></div><div><span class="Apple-style-span" style="font-family: Arial; font-size: 13px; color: rgb(51, 51, 51); "><br /></span></div><div><span class="Apple-style-span" style="font-family: Arial; font-size: 13px; color: rgb(51, 51, 51); ">Once people understand the spoon theory they seem to understand me better, but I also think they live their life a <a id="term_2017544_6" class="highlight_link" href="http://www.medhelp.org/tags/show/130100/Little-Noses-Decongestant" style="color: black !important; text-decoration: none; border-bottom-style: dotted; border-bottom-width: 1px; border-bottom-color: rgb(102, 102, 102); ">little</a> differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any <a href="http://www.medhelp.org/posts/Multiple-Sclerosis/The-Spoon-Theory/show/330233#" class="kLink" target="undefined" id="KonaLink4" style="color: rgb(0, 108, 200) !important; text-decoration: underline !important; border-bottom-style: none !important; cursor: pointer; font-family: verdana; border-top-width: 0px !important; border-right-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important; border-top-style: none !important; border-right-style: none !important; border-left-style: none !important; border-top-color: transparent !important; border-right-color: transparent !important; border-bottom-color: transparent !important; border-left-color: transparent !important; background-image: none !important; background-attachment: initial !important; background-origin: initial !important; background-clip: initial !important; background-color: transparent !important; margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 0px !important; padding-left: 0px !important; text-transform: none !important; display: inline !important; font-variant: normal; top: 0px; right: 0px; bottom: 0px; left: 0px; outline-style: none; outline-width: initial; outline-color: initial; position: static; background-position: initial initial !important; background-repeat: initial initial !important; "><span style="color: rgb(0, 108, 200) !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; color:#006cc8;"><span class="kLink" style="border-top-width: 0px !important; border-top-style: none !important; border-top-color: initial !important; border-left-width: 0px !important; border-left-style: none !important; border-left-color: initial !important; border-right-width: 0px !important; border-right-style: none !important; border-right-color: initial !important; border-bottom-width: 1px; border-bottom-style: solid; border-bottom-color: initial; padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 1px !important; padding-left: 0px !important; color: rgb(0, 108, 200) !important; background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: transparent; width: auto !important; float: none !important; display: inline !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; background-position: initial initial; background-repeat: initial initial; ">disability</span></span></a> or<a href="http://www.medhelp.org/posts/Multiple-Sclerosis/The-Spoon-Theory/show/330233#" class="kLink" target="undefined" id="KonaLink6" style="color: rgb(0, 108, 200) !important; text-decoration: underline !important; border-bottom-style: none !important; cursor: pointer; font-family: verdana; border-top-width: 0px !important; border-right-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important; border-top-style: none !important; border-right-style: none !important; border-left-style: none !important; border-top-color: transparent !important; border-right-color: transparent !important; border-bottom-color: transparent !important; border-left-color: transparent !important; background-image: none !important; background-attachment: initial !important; background-origin: initial !important; background-clip: initial !important; background-color: transparent !important; margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 0px !important; padding-left: 0px !important; text-transform: none !important; display: inline !important; font-variant: normal; top: 0px; right: 0px; bottom: 0px; left: 0px; outline-style: none; outline-width: initial; outline-color: initial; position: static; background-position: initial initial !important; background-repeat: initial initial !important; "><span style="color: rgb(0, 108, 200) !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; color:#006cc8;"><span class="kLink" style="border-top-width: 0px !important; border-top-style: none !important; border-top-color: initial !important; border-left-width: 0px !important; border-left-style: none !important; border-left-color: initial !important; border-right-width: 0px !important; border-right-style: none !important; border-right-color: initial !important; border-bottom-width: 1px; border-bottom-style: solid; border-bottom-color: rgb(0, 108, 200); padding-top: 0px !important; padding-right: 0px !important; padding-bottom: 1px !important; padding-left: 0px !important; color: rgb(0, 108, 200) !important; background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: transparent; width: auto !important; float: none !important; display: inline !important; font-family: Arial; font-weight: normal; font-size: 13px; position: static; background-position: initial initial; background-repeat: initial initial; ">illness</span></span><span id="preLoadWrap6" class="preLoadWrap" style="position: relative; "></span></a>.</span></div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-89765044148184087362010-06-06T12:00:00.000-07:002010-06-06T12:03:52.741-07:008 lbsWell, forgot to weigh in on Friday morning, so I was not able to until today (Sunday) and I am down 8 lbs. WOOHOO!! So excited and will keep it up. Going to try some tofu today, I really hope I like it, its a good alternative to meat. So we will see.<div><br /></div><div>Hope all has a great week and I will update on Friday with my new weigh in and measurement lose.</div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-90322724571442072972010-06-01T17:00:00.000-07:002010-06-01T17:13:16.500-07:00Stormy WeatherWell today was my Monday at work, pretty slow and relaxing especially for the day after a holiday. Could have really used a nap about 11a, but otherwise today was good. Horrible storm blew through here about 5p, right at rush hour, still raining 2 hours later, but all is well on the home front. Didn't think to go outside and post of pick, so I borrowed some from our local tv station.<div><img src="http://2.bp.blogspot.com/_NpaU_eK0How/TAWf9FGSuMI/AAAAAAAAABg/twIIrziooZY/s200/storm.jpg" style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 52px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5477960393455483074" /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>Tornado watches, warning and all. I have not heard of any major damage or injuries which is good. My dear husband the good samaritan and friend, went out to help one of his friends whose car died while it was pouring rain. That is just one of the reasons I love him so.</div><div><br /></div><div>Tonight is time for my every-other-day shot. I am going to try and convince my husband to give me a shot in my arm, because my tummy and legs have bruises all over them from these shots. But he is deathly scared of needles. So, I will probably just do it myself. </div><div><br /></div><div>Food intake today went really well, no red meat, I kept my saturated and unsaturated fat between 10g. Which is good it needs to be under 25g. Got home and did some stretching and lifting for about 20minutes before my legs just gave out. But I feel good. My weigh in is on Friday so I will post my outcome then. Hope everyone stayed safe.</div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-56847517713066067812010-05-31T18:25:00.000-07:002010-05-31T18:35:22.426-07:00WTF<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_NpaU_eK0How/TARjUUHB4LI/AAAAAAAAABY/oNaRcampVKw/s1600/muffin+top.jpg"><img style="cursor:pointer; cursor:hand;width: 200px; height: 133px;" src="http://1.bp.blogspot.com/_NpaU_eK0How/TARjUUHB4LI/AAAAAAAAABY/oNaRcampVKw/s200/muffin+top.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5477612247436091570" /></a>Me and my muffin top! :(<br /><br /><div><br /></div><div>So, I know that I have let myself go recently. But WOW!! I just saw some photos taken of me this weekend and my my my! Okay it has got to stop. Even though fatigue is one of my biggest challenges, I know that I can do this. My goal is 30-40 lbs. The chee-itz have got to go!! As I stated before I am trying a new diet made especially for people who have MS. It's the Swank diet. So not so big of a challange...no red meat, and watching the saturated and unsaturated fat the I consume. More exercising, I did try P90X but good gosh that work-out kicked my butt. I am going to stick with Yoga and another work out video that I have, plus the bike. If I can get Jeff to go for walks with me, then I will add this into the mix as well.<div><br /></div><div>I refuse to post my weight (at least for now). My goal is listed above and my motivations are our FLORIDA vacation in August and a Wedding in September where I will be a brides maid. I will keep you posted.</div><div><br /></div><div><br /></div></div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-69587365614961761502010-05-29T19:10:00.000-07:002010-05-29T19:21:19.835-07:00HEAT Sucks<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NpaU_eK0How/TAHLCQmujKI/AAAAAAAAABQ/dJd1njx4kVs/s1600/me%26anakin.jpg"><img style="cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="http://3.bp.blogspot.com/_NpaU_eK0How/TAHLCQmujKI/AAAAAAAAABQ/dJd1njx4kVs/s200/me%26anakin.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5476881861536812194" /></a><br />So, one of my main issues is HEAT. I try not to place myself into a place with no AC especially in the summer time or warmer months. So today I ventured out (which is rare) with my husband and some of his friends to a Star Wars Troop. The building was hot inside and started to get <span class="blsp-spelling-error" id="SPELLING_ERROR_0">unbearable. When this happens my patience starts to wear thin and I get tired. (think heat stroke). </span><div><span class="blsp-spelling-error" id="SPELLING_ERROR_0"><br /></span></div><div><span class="blsp-spelling-error" id="SPELLING_ERROR_0">I usually now when this is coming on, because I literally feel like I am sweating profusely and my eyes start getting heavy and my feet start dragging on the ground. I just try and let my husband know when this happens because the last thing I need is a scene with either me totally freaking out on someone or my collapsing from the heat exhaustion. This weekend is my dear, dear husband birthday, so I am trying to take it as easy as I can, so that he will have a great birthday.</span></div><div><span class="blsp-spelling-error" id="SPELLING_ERROR_0"><br /></span></div><div><span class="blsp-spelling-error" id="SPELLING_ERROR_0">I started a new diet that is specially made with individuals who have MS. Hopefully I can do this. I will keep you all posted. </span></div><div><span class="blsp-spelling-error" id="SPELLING_ERROR_0"><br /></span></div><div><span class="blsp-spelling-error" id="SPELLING_ERROR_0"><br /></span></div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-60902330417737084222009-11-15T15:41:00.001-08:002009-11-15T15:44:29.528-08:00Stress and MSI always laugh when my dear doctor tells me that stress is bad and try to stay stress free. UM, that is just not possible. I still work full time 40 or more hours a week, care for my home, my husband, and my animals as well as an ailing parent. Money is always tight and life sometimes just doesn't go the way it should. <div><br /></div><div>Live stress free. Please, what land is my doctor living in. To help alleviate some of the stress I do crafts, or read, or just hang out with friends, but there is always stress somewhere or being caused by someone. </div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-66213645217449392102009-11-08T11:06:00.001-08:002009-11-08T11:10:52.113-08:00New Symptom?So being my own advocate and just wanting to know what the heck is going on with my body in general. I did a search for this new symptom that I have been having lately. If I am correct in my "diagnosis" it is called myoclonus. Whenever I get tired either from walking, exercises or just generally moving around my legs and arms start twitching. I happen to stubble onto an video about a women who has had MS for over 20 years, the interviewer asked her about her leg, that looked like it was hopping around, she stated that it was myoclonus. <div>So I decided to do some more research and I'll be darn if that isn't what is happening to me. For me personally it is not painful, but extremely annoying. Have you ever tried to stand on your legs when they are shaking uncontrollably? Oh well, just one more thing to add to my list...sigh.</div>MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-12697826136507932302009-10-26T16:49:00.000-07:002009-10-26T16:57:19.824-07:00Pain, pain go away.I went onto some of my normal MS websites (forums) and there seems to be alot of post about pain, weather muscle or joint pain. I do normally see these posts, but there seems to be a huge abundance of them lately. It makes me wonder if the season changing might be a trigger for alot of us that have this stupid disease. Since the end of spring about 2-3 weeks ago here in Nebraska, I have had more muscle and joint pain and fatigue than normal. I try to remember if it has been like this every season, but my short term memory loss is part of my disease. We will see as the season goes on.MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0tag:blogger.com,1999:blog-6528091623707380363.post-46970716939721103682009-10-25T17:44:00.000-07:002009-10-25T18:01:09.794-07:00Starting OverThis is a blog about my disease and me. I have started and stopped journals so many times. I can never seem to remember to keep writing. Maybe a blog will help. I was diagnosis with MS January 1st 2000. (HAPPY NEW YEAR). This was a bittersweet moment for me. This was the beginning of a journey that I did not know I was prepared for. Nine years later, I can still function for the most part in the world. I have good days, I have bad days and I have super bad days. There is no in between. I force myself everyday to accomplish what most people accomplish on a daily basis. So thats the basic of it. (very basic). I will keep this updated with more later.MS and MEhttp://www.blogger.com/profile/11376104491738414561noreply@blogger.com0