tag:blogger.com,1999:blog-5903667829771401982024-03-19T03:47:02.005-05:00Living Day to Day with Multiple SclerosisLiving with Multiple Sclerosis is a daily battle. MS is the invisible disease or at least for most people. We fight many emotional and physical symptoms all the time. We need as much support as we can get. However due to the invisible symptoms we tend to not get a lot of support and that brings on more emotional stress which in return brings on more MS symptoms. A Vicious cycle.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.comBlogger187125tag:blogger.com,1999:blog-590366782977140198.post-17433848247773689352018-12-17T02:38:00.001-06:002018-12-27T07:57:05.539-06:00A Little Off My Chest- Gave Me More Room to Breathe<p dir="ltr">A LONG STORY... I'M AIRING OUT about a thing or 2. OK, More like 100 things and this is being posted on FB and my Blog. </p><p dir="ltr">❤️ Holy 🐄 !! I didn't expect so many responses and likes for updating a profile picture on Facebook last week... LOL </p><p dir="ltr">But it got me thinking??? <br />
Now that I think about it, it probably has been about 5ish years since I've posted on here and 8-10+ years since I've talked or seen anyone. (Family and Friends) I'm truly sorry about that from the bottom of my heart.</p><p dir="ltr">Depression and Anxiety sucks and between that and the other medical issues it all has sucked the life away from me. ❤️ All I can do is say I am sorry and that I think of you all often. </p><p dir="ltr">Wow!!! Besides a few very select family members, this is the first time I've admitted what has been going on with me for all these years. I've lost a lot of relationships due to me being so afraid or embarrassed to tell anyone and other relationships have ended because they chose to be angry at me for cancelling plans or for secluding myself into a deep hole and not believing that I haven't been secretively living a life behind their backs.</p><p dir="ltr">Besides forced Dr. appointments, in the last 6 years, I have only left my house maybe 10 times. I haven't been able to have anyone over to see our "New Home" (6 years now + a few years before that), I cant even answer my phone. I didn't see this happening to me it just became my life.</p><p dir="ltr">I haven't driven in almost 4 years after having a panic attack so bad while driving to the store, for last minute Christmas shopping, and ended up crashing our new car. It wasn't bad but it scared me so much I knew that something more was going on with me other than the MS. </p><p dir="ltr">I still have a very long way to go but I'm finally starting to get back on Blogger & FB to start communicating and slowly touching base with you all. </p><p dir="ltr">I've missed so much: weddings (barely made it to my own daughters wedding), funerals, holiday celebrations, reunions, births, my kids school functions and sports and most importantly Adam's graduation, my children's Dr. appts, surgeries and hospital stays, and not being able to be there for my family, friends, and everyone that I've always been there for. I can't change what has happened or what more is to come but I can keep trying. </p><p dir="ltr">Oddly, through all of this craziness I've learned a few things about life and how fast things can change. I've learned after all of these years that I will never be able to make everyone happy, please everyone, solve their problems, and may never be enough for others and that's ok...Who would have ever thought they'd hear me say that? Yes, I still worry about what everyone thinks about me, I still spend my no sleeping hours (insomnia) trying to figure out how to help the people that are going through issues BUT... my learning lesson in that is that somehow it always comes back to smack me in the face or punch in the gut. So, even though I may be thinking of how to help my friend/family that is dealing with their issue... That's the Key phrase!!! It's their issue and their's to solve. Last but not least... I have learned to stand up for myself. I can't be a punching bag anymore. If someone is mad at me for something that I did, come to me and let's talk it out. If someone is mad at me for something they have concocted in their head or assumed something I may have done, am thinking of doing, etc... I don't have it in me anymore to care or fight for that relationship. I have spent so much time worrying about what others are thinking about me.<br />
THE TRUTH IS : If our relationship was even for a few minutes (because I am an open book) then you know me and would know that I would never purposely do anything to hurt anyone. I'm not writing this because of any other reason than to finally get it out there... I can't keep apologizing for something that is out of my control and that I am suffering from. </p><p dir="ltr">Whew.... I think I got it all out of me... Screaming it from the rooftops!! Maybe this will help and maybe it wont??? </p><p dir="ltr">I'm sitting here wanting to push send and feel a little relief but then I'm also rethinking this because somehow or someway this is going to come back to bite me is the ass. </p><p dir="ltr">Look, if anyone is still even reading this book LOL?? Depression and anxiety can happen to anyone at any age from a child to elderly it can be caused by trauma, disabilities, a loss of a loved one, a sick child/ spouse/ parent/ friend/ favorite fur-babies (pets), or just life in general. Everyone has a breaking point!!! It can be relationship issues, a break up (especially kids because coping skills are not quite built yet), bullying, an illness, loneliness, financial issues, loss of job, fear, failures, fear of failures, etc...</p><p dir="ltr">For me it was the chronic pain, the MS symptoms and the side effects from the medications -13 different kinds all at the same time which is definitely going to cause problems. And Lord knows, it has!!! Sleep issues, weight gain, emotional, hormonal and other issues. Along with the added stress and triggered stressors from my past that I never dealt with.</p><p dir="ltr">This time of year is extremely hard on people that suffer from depression/anxiety. Good stress is just as hard as bad stress. All stress is still stress. </p><p dir="ltr">People automatically assume that the person (young or old) that looks gloomy, crying or angry is what depression or anxiety looks like, but, a lot of times, it's the person that is just standing next to you looking down at random things that puts a big smile on their face ( when it wasn't there before) and laughs when they realize someone is looking at them. It's because they wear a mask they've learned to hide behind. </p><p dir="ltr">So I have a challenge for anyone?? Everyday, during this time of year or all year. Choose a random person, any place you go, or person in line before/behind you, or person you see standing by themselves (child-elderly), do something nice. Say Hi, compliment them (not creepy compliment) but maybe about their coat/ hair/ etc..., make them smile or laugh, hold the door for them, tell them to have a good day, buy them their cup of coffee, tell them it was nice to meet them or what they said/did made your day, most importantly... just acknowledge them. If you do this challenge I would love to hear about it but mostly I really want to know how it made you feel? </p><p dir="ltr">The End!!</p>Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com0tag:blogger.com,1999:blog-590366782977140198.post-87635328049013980662014-08-08T21:36:00.000-05:002014-08-08T21:36:38.966-05:00Where Did I Go?? Journal Entry #4<br />
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<b> Where Did I Go?? Journal Entry #4 </b><br />
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Hi Everyone!<br />
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It has been such a long time since I have posted. I guess the best answer I have, is that I really found myself lost... and needed to take a <b>LONG TIME</b> to start finding myself. I had a lot of things to <b>THINK</b> about and figure out how to start weeding through, dealing with, and most importantly... Taking Care of Myself.<br />
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I made some good choices, bad choices, mistakes, lost relationships with family and friends, etc... It has been a long journey, however, it has been a well needed journey to go through. It has given me the time to <b>THINK</b>.<br />
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One thing I can say that I have learned is that, <b>"GOOD COMES OUT OF EVERY BAD"!!!</b> You may not be able to see it right away, even months, or years. As long as you keep yourself willing to find the <b>GOOD</b>, no matter how big or small, life seems to become a lot easier to understand and find the right paths for <b>YOU</b>. If you can find the right paths, then you don't feel so lost and it sure makes the answers of <b>Where did I Go</b>, a lot easier to figure out and how <b>YOU</b> choose to handle it. <br />
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Now, the issue of me taking this long to <b>THINK</b>.... Means.... I have so much to talk about!! I have kept a list of topics, ideas, discussions,etc... So watch out! LOL<br />
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Don't get me wrong... Life isn't perfect and it never will be. A few things that has worked for me: <br />
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* I Take time everyday to sit outside and enjoy listening to the birds and seeing the hummingbirds.(Nature is so calming for me)<br />
While sitting out there, I also am taking in the sun (which is good for all of us, especially anyone with an autoimmune disease/disorder) even if it is for just a few minutes at a time. <br />
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* Talk to your Dr's!! I ended up leaving my Dr. and picking 3 great Dr.'s that I can talk openly with and that alone, has made coping with MS, Fibro, Depression, Anxiety, and a few other issues so much easier on me. I also have a better understanding of how they affect me and why. For me, I chose younger Dr's. I found that younger Dr.'s are more open to new and fresh ideas. <br />
<b>*HINT*</b> - It is very common for anyone with MS to suffer from Depression, Anxiety, and even Phobias!! Don't be afraid or embarrassed to get help and treatment. REMEMBER... YOU ARE DOING IT FOR YOURSELF!!! (I WILL BE TALKING MORE ABOUT THIS SOON)<br />
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<b>I CAN'T STRESS THIS ENOUGH...<br />
DO NOT EVER BE SCARED, EMBARRASSED, ASHAMED, THINK YOU CAN HANDLE IT YOURSELF, ETC... IT IS COMMON AND EVEN MORE COMMON WITH SOMEONE THAT HAS ANY DISEASE/DISABILITY/ETC... NOBODY HAS TO EVEN KNOW, EXCEPT YOU AND YOUR DOCTOR.</b><br />
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Whether it is Multiple Sclerosis or any Disease/ Illness/ Disability/ or even just Life itself, Try to take some time and find the <b>GOOD</b>, it sure made coping with the bad, so much easier. I don't feel so alone and most importantly <b>LOST!!</b> <br />
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Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com1tag:blogger.com,1999:blog-590366782977140198.post-11711049794932122822012-02-13T17:16:00.000-06:002012-02-13T17:17:33.022-06:00Where Did I Go?? Journal 3 Entry<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjteRREjYo-Ea0pzYQFHRJv82dH33LtoVUdSf4y76T-PcfCY0po6Q53WFo_zugSrOrzBA3G6yRSTk33LqVrdp5Tl4NdwYGSmUQdRutD2TmjUs6Qqkq4Os3YkDAI7HBe1hxjdtIuil6hNQ/s1600/emo_love_quotes_and_sayings_photo-129295.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="350" width="350" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjteRREjYo-Ea0pzYQFHRJv82dH33LtoVUdSf4y76T-PcfCY0po6Q53WFo_zugSrOrzBA3G6yRSTk33LqVrdp5Tl4NdwYGSmUQdRutD2TmjUs6Qqkq4Os3YkDAI7HBe1hxjdtIuil6hNQ/s400/emo_love_quotes_and_sayings_photo-129295.jpg" /></a></div><br />
I have spent a lot of time thinking over the past couple months. Trying to figure out where things went wrong, when did all of this start, how could I have gone so deep into a hole and nobody see it? Then I realized it didn't matter, what matters most is getting better. It is very frustrating to me that it doesn't change or can get fixed fast enough. At times I feel like I am in such a very deep, lonely, hole that only I can get myself out of. It is very hard having a Multiple sclerosis, a disease that causes so many symptoms that are invisible to others. That alone makes you feel very lonely and frustrated. Comments that are made all the time like "At least it's not Cancer", "You are just being lazy", "I know others with MS and they are just fine", "You never want to do anything". I think I could go on and on with the hurtful comments that we have to deal with daily. MS is a very hard and exhausting disease to fight everyday but our friends and family can make us feel as though we are fighting the world. Friends and Family start to disappear, in some ways it may be a relief but in others it only brings us down further and further into the hole.<br />
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As I mentioned earlier, I have spent a lot of time thinking the last few months. I have realized that I have to take responsibility for some of this too. How long can I expect people to wait for me to be able to and want to feel well enough to hang out. It is embarrassing to have them see us when we fall, dropping things, our memory and cognitive thinking impaired, not able to walk far before the pain becomes unbearable, etc.. Eventually people have to go on with their lives. The problem is that includes our spouses, children, parents, and siblings. Once I finally had to own up to my responsibility in this is when I realized how bad things really were and it was up to me to continue down this path or change what I could.<br />
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Don't get me wrong... I am still struggling with this, however, I realize that it is ME that determines how my day is going to be. I have put a few things in place over the last few weeks and so far it is helping. There is NO POINT SETTING GOALS THAT ARE IMPOSSIBLE TO REACH OR TO MANY GOALS. THAT IS SETTING MYSELF UP FOR FAILURE. <br />
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~ When I wake up.. I try to think of good things. Not worrying about the "what if's". If I catch my mind wandering down the negative path, It is either time to get up and start my day or change my thinking again. While working on my "Good Thoughts/Positive Thoughts" I also do deep slow breaths through my nose. I have found this to be the best and quickest way to lessen stress, slow my brain down, slow the anxiety. I use this breathing technique all day long. <br />
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~ I make my bed as early as possible. Who doesn't love getting into a nicely made bed? It only takes a few minutes and Woo Hoo... I accomplished something for the day. I am finding that by having my bed made, it is keeping me from climbing back in bed and curling up under the blankets. Of course, If it is a really bad leg day or spasms and/or pain is unbearable, then I have a nice comfy cozy bed to get into.<br />
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~ Exercising/Stretching~ Wow, this is a big one. When you are in pain or having horrible spasms, it is so extremely hard to even think about exercise of any sort. Starting the beginning of January, I added stretching and yoga poses into my day. It is amazing how far I have come in just a little over a month with this. Here's the thing.... I am in pain almost every day without doing anything at all. Stretching and exercising actually gives me a few hours of numb muscles (NO PAIN). I have put on almost 30 pounds since I was dx. Some from the meds I have been on over the years and the IV steroids but also from not doing anything. I know that by losing weight it will help me feel better about myself. I have continued doing the exercises, yoga, and recently added cardio into my daily routines. Yes, I still have pain and spasms each day but I was going to have them anyways...<br />
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~ I have put into place a Rule... Do #1 thing for me each day! I don't have the money to go do expensive, fun things daily... For instance exercising is something. Painting my toenails or fingernails. Buy a box of color for my hair and cover those grays. Put make up on, take a nice warm Bath/Shower... The point being. I have had a hard time over the years caring what I really looked like. Nobody was going to see me, I wasn't going anywhere, I felt like hell and was just going to stay in bed, etc... Amazingly, how doing one thing to your appearance, changes your self esteem almost immediately. The difference is that I am doing this for me... Not for other people. Taking 5 minutes or a half hour to do something for myself makes a huge impact with my emotions. Trust me, it works.<br />
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~ I have eliminated, when I can, depressing or serious things. The shows I watch on tv have an extreme impact on my thoughts and mood, especially when I am struggling that day with anxiety or feeling down.. Seriously.. Try it!! For instance, the news has a few interesting things but the majority of the news is all the bad and evil in this world. If you have to watch the news, try skipping the first 10-13 minutes of it. Instead of watching Law and Order (My Favorite) and turn on a stupidly funny show on tv.. If you try this for 1 week. You will see the difference.<br />
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That's it folks. These are the very few things I have put into place Since the beginning of January and some have just been the last couple of weeks. I think this is enough and is hard enough to just work on these. I have seen really good improvements in my mood. As I continue working on these throughout February I will work on my next new goals. Facing my Fears of Leaving the house and being around people... Oh Boy!!! I can feel the anxiety kicking in just mentioning it. For now, I will worry about today only and continuing to work on the few goals I have set into place.<br />Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com37tag:blogger.com,1999:blog-590366782977140198.post-16265170882826452072012-02-05T12:56:00.000-06:002012-02-05T12:56:11.601-06:00Where Did I Go ~ Journal #2The last few days have been difficult for me. The anxiety has been out of control. Its been beautiful temperature wise, but gray and gloomy out too. Makes me wonder if Winter has something to do with this craziness, I am going through. For instance, the last 3 days have been gloomy out and I just wanted to stay in bed and hibernate. Today, I woke up at 4:30, kind of dreading another day. Mad that I couldnt sleep. I made the coffee and watched as it went from darkness to light outside. I peeked through the blinds to see gray skies, yet again...
In an instant, around 9:00, the skies opened up and bright sunlight is shining down. Instantly, without realizing it, I am staring at my bed. Not thinking about climbing back in... I start tearing the sheets off and throw them in the wash, while in the kitchen I decide to start cleaning the counters and picking up all the clutter. I walk back into my bedroom and throw down the yoga mat and start exercising and doing yoga stretches. Whoa, what is going on with me?? I get back to cleaning and writing a list out of things I need to do and get from the store.
I am still going strong!! Just wanted to stop and process what is going on today? Is it the Sun, is it a fluke, is it that I am sick of laying in bed and hiding in my room? I have no idea! I guess I dont have to have the answer, I just need to enjoy it while it lasts. Happy Superbowl Sunday and hope you are enjoying Your Day!Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com3tag:blogger.com,1999:blog-590366782977140198.post-29191473508048423542012-02-02T13:45:00.000-06:002012-02-02T13:45:35.413-06:00Where Did I Go??<a href="http://1.bp.blogspot.com/-kxoJwGo4QCY/Tyrj2DhYvII/AAAAAAAAB5w/rsorMAcnzu4/s1600/Question-Mark-Red1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/-kxoJwGo4QCY/Tyrj2DhYvII/AAAAAAAAB5w/rsorMAcnzu4/s400/Question-Mark-Red1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5704622395815935106" /></a><br /><br />Happy Ground Hogs Day! It's amazing how fast time goes by. I was looking back last year at how few Blogs I wrote and how many times I really intended on blogging. I have had lots of topics or ideas that I thought about writing but never could find the energy or ambition to write. This is just a glimpse as to how things have been going in my life. Depression, Anxiety, and Phobias have taken over my life and I never saw it happening until it was almost too late.<br /><br />Being diagnosed with Multiple Sclerosis was very hard. I was diagnosed in March of 2007, after a very long and rough exacerbation. Now looking back, I would say that the depression first started. If you don't see it happening, you don't get help. As the years have gone on so have the pains and symptoms. I spent more time in bed and unable to do all the things I used to do and even wanted to do. If I had a good day, I would push myself and then suffer for days. Heck, who am I fooling, I still am going through that. It wasn't until last Fall that I started realizing how distant I have become from everyone. The Holidays were fast approaching and the worse I was feeling. I was waking up sick, the pain increasing, was crying from the second I woke up until I went to bed, and much more. It wasn't until the day that everyone was leaving the house. I started shaking, felt like I was going to be sick, had this horrible sensation of fear, and then started crying. Are you kidding me? I am afraid of being alone? I felt like I was losing my mind. What is wrong with me? <br /><br />I have always refused talking to a therapist, mostly because there was nothing wrong with me. Or at least I didn't think so. After a few more episodes of this craziness I had to make that dreaded call. By the time I went in to see him, it had become even worse and was happening everyday all day long. While talking to him and answering his questions, I actually was becoming more and more embarrassed with my answers to these questions. I am the type that avoids calling the Dr's until a lot has built up, mostly because after being diagnosed with MS, I find that everything would get blamed on MS. When I do finally get the nerve to call and go in to see them, usually the issue is at the extreme and then I want fixed... I WANT FIXED NOW!!! I guess I forget that the issue(s) may have been fixed fast if I would have gone in but I let it go months and months. So, of course, I went to the Therapist, answered the questions, and expected him to fix whatever is going on.<br /><br />It didn't go that way. I am listening to him talk and it was like a Charlie Brown's Cartoon. "Wait... What did you just say"? The Therapist said it again. "You are having <a href="http://www.webmd.com/anxiety-panic/default.htm">Severe Anxiety Attacks</a>, You have <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001941/">Major Depression</a>, and you are suffering from <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001921/">Agoraphobia</a> this is very common in people that have been very sick for a long time. Part of this can be due to the MS". I kind of giggled, in disbelief or maybe embarrassment, and then hit him with my normal response. "OK, so how do we fix this? Christmas is in 3 weeks and I have to be around all our family and friends. It's been over 3 weeks since I left the house and the idea of being around everyone is causing this to get worse and worse.<br /><br />Then the dreaded words came out... "This has been going on for years, this will not be an easy or quick fix. How bad do you want to live, keep your family and friends, and most importantly... be happy and live your life again"? Of course I choose to get my life back and most importantly be happy. I miss the "old me" I feel like I have lost me and people expect so much out of me and don't understand or don't care. I worry about everything and everybody, I care so much about others and continue to get hurt everyday. I never speak my mind, out of fear of hurting other's feelings but they do it to me all the time. I wish I had the switch that other's have to make me not care. He responded with " You are You and You can't change the way other's are and how they will treat you. All you can do is learn to find ways to cope with being hurt, let down, disappointed, etc.. If that is the life they choose to live to make them happy, that is their choice. All we can do is work on what makes you happy and how to cope or handle those situations".<br /><br />This is the beginning of finding "ME and My Inner Happiness". Does anyone else feel the same way or go through the same battle as me? Have you ever wondered "Why Me"?? Well, I always do and always come back with the same answer and that is... To help others. As hard and embarrassing as this is to me. I will journal my Journey as often as Possible. I get through life by helping others and I hope this will help others. Feel Free to Follow along and see where this journey leads... Hopefully to finding my Inner Happiness.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com9tag:blogger.com,1999:blog-590366782977140198.post-28795140313828627782011-10-10T15:53:00.002-05:002011-10-10T16:05:09.589-05:00Symptoms Of Multiple Sclerosis and Info LinksI am in the middle of a Flare Up and have been spending the day reading questions people have about Multiple Sclerosis. I don't have a lot of energy to write a Blog but I couldn't resist this... I found a Wonderful Page that someone has taken a lot of time to list Symptoms that are common with Multiple Sclerosis. I hope this is helps answer a lot of the questions you may have or your family and friends.<br /><br /><span style="font-weight:bold;">Please follow this link and see all the symptoms that are common with MS.</span><br /><br /><a href="http://www.mult-sclerosis.org/mssymptoms.html">http://www.mult-sclerosis.org/mssymptoms.html</a>Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com17tag:blogger.com,1999:blog-590366782977140198.post-45117872834075099132011-09-28T02:20:00.000-05:002011-09-28T02:21:35.669-05:00The Spoon Theory<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://s3.thisnext.com/media/largest_dimension/34862F5F.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 420px; height: 420px;" src="http://s3.thisnext.com/media/largest_dimension/34862F5F.jpg" border="0" alt="" /></a><br /><br /><br /><br />I was diagnosed with MS back in March of 2007. I have heard references to the "Spoons" or the "The Story about the Spoons" but today was the first time I had the chance to read the "Spoon Theory". I think it is a great way to help explain how having MS feels like. I decided to share the "Spoon Theory" with you.<br /><br /><span style="font-weight:bold;">The Spoon Theory</span><br /><br /><br />My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.<br /><br /><br />As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?<br /><br />I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.<br /><br />As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. 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. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.<br /><br />At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. 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. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.<br /><br />I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.<br /><br />Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, 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 control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.<br /><br />She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?<br /><br />I asked her to count her spoons. She asked why, and 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. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? 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.<br /><br />I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” 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 medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.<br /><br />I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that 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”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.<br /><br />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. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.<br /><br />When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.<br /><br />I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”<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 wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. 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”.<br /><br />After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”<br /><br />Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.<br /><br /><span style="font-weight:bold;">© Christine Miserandino </span>Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com18tag:blogger.com,1999:blog-590366782977140198.post-20199257736979408402011-06-18T14:57:00.000-05:002011-06-18T14:57:59.988-05:00Part 2 to "Medications and Interactions" UpdateI wanted to UPDATE to you regarding my last Blog "Medications and Interactions"<br /><br />I went in and had my E.K.G. done the day after I wrote the first article. I found out last Saturday, that the E.K.G. Came back showing an <span style="font-weight:bold;">abnormality.</span> I have to go through a 6 hours testing process this Tuesday to try to figure out what is causing or where the problem is. The Exact wording was... An Abnormality of the transit Time of Electrical Impulses Across the Heart. Then it was followed with... You are to stay calm, avoid stress and stressful activities, Relax and try to lay down as much as possible. We don't want you standing for long periods of time either, until we go further with the testing. <br /><br />How do you tell someone this and then expect them to not get stressed, the anxieties, emotional, etc...? Maybe it is just me, but I apparently am not doing so well on the restrictions... I have had a few people recommend going after my Doctor who screwed up with the two medications. What good is that going to do? At this minute all I care about is figuring out why and how to fix the problem. I would be lying if I said that I wasn't scared to death. I mean really, with having MS, Chron's, and Fibro... I am not one of those "LUCKY" kind of person.<br /><br />The first few days I was scared and cried a lot. Then I had a day or two that, I was pretty calm, and then everyday that I have gotten closer to This Tuesday the anxiety has become worse and worse. <span style="font-weight:bold;">I guess, I just wanted to UPDATE you and STRESS the IMPORTANCE AGAIN ~~ To Research and Triple Check for interactions of the Medications You Are On or A Loved One Is On.</span> We trust our Doctors and I have watched them plug in new medications to see if it is flagged for possible complications or interactions and none were flagged. The few that have been flagged the Doctor's changed the medication they were going to use. I don't know how exactly this was missed or overlooked, but it was missed by many Doctors and Pharmacists. <br /><br />I think I have come to the conclusion that we, with MS or any disease, know that we are on a lot of medications. We hope that they will help treat the disease, the symptoms, the pain, FIX US... But if we all stop and think about it, anytime we are on medications, whether it is 1 or 15, for long periods of time. There is always chances for problems to arise. That is something we all have to live with, but not something we think about when all we want, is to feel better or get better. I will update again, after I find out more, because I hope this can help at least 1 person but mostly to keep us all aware of the complications and interactions from medicines we take.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com8tag:blogger.com,1999:blog-590366782977140198.post-17667155698179336832011-06-10T14:35:00.001-05:002011-06-10T14:39:19.667-05:00Medications and Interactions<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://t2.gstatic.com/images?q=tbn:ANd9GcRGlZUOEHPy0TLEEOscMI9H7vcnWqHrKd8mz2ZDQCrkFLaik-K7"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 233px; height: 175px;" src="http://t2.gstatic.com/images?q=tbn:ANd9GcRGlZUOEHPy0TLEEOscMI9H7vcnWqHrKd8mz2ZDQCrkFLaik-K7" border="0" alt="" /></a><br />Wow! It has been a long time since I have posted.. I hope to change that and post more frequently as I have a lot to say..<br /><br /> <a href="http://cpref.goldstandard.com/inter.asp?r=8133"> Medications and Interactions<span style="font-weight:bold;"></span></a><br /> <br /> <br />I recently had a HUGE eye - opener...<span style="font-weight:bold;">OK VERY BIG SCARE!!</span> We MS'ers, along with many other people with diseases and illness. Are treated by different Doctors and plenty of medications. We trust our Doctors, our Pharmacists and our own checking and investigating of the medicines we are on. <br /><br />However, I was on Xanax for probably about 10 years (way before being diagnosed) for horrible anxiety attacks. About 7 years ago I had complained of having Burning and prickling sensations (Which by the way, was the beginning of about 13 more symptoms from my first major exacerbation). My Doctor, Primary Care Physician (PCP) added Klonopin to my medications. As the years progressed and so did my MS and Fibro, she upped my dosage of Klonopin to 1 in the A.M., 1 in the Afternoon, and 2 at night. I also was allowed to continue the Xanax on a as needed basis up to 1 3 times a day. Because of how the scripts were written it did not sound off any alarms to the Doctors and Pharmacy. <br /><br />The last few months, ok 6 months have been very stressful and the pain I have in my legs had really become very severe. A new medication had been added to my full tray of daily medications, to help with the pain. Norco was added for the severe pains by my Neurologist but because it wasn't enough, I was sent to a Pain Management Doctor. Probably the best thing that I could have ever done. She quickly started a new medicine that really started helping me more than most of all the meds I had been on for years. When you go to a Pain Management Dr. (PMD) they go through all of your meds and try to reconfigure but also try to get you on the meds to treat the symptoms and also start to introduce new things like physical therapy, massage, etc... While researching the long list of my medications she realized the Deadly Combo... In her words<span style="font-weight:bold;"> " Instant Death"</span>. What??? I have been on these for a very long time. A bottle of Xanax usually lasted me a year, I tried not using them too often. However in the last 6 months, I have been using them regularly. She said.. "The combination of the Klonopin and Xanax together could have caused <span style="font-weight:bold;">INSTANT DEATH</span> and adding the Norco's with this combo really could have done this". She said, that if you were going to use the Xanax, that I had to choose not to take the Klonopin. "ONE or the other". I was never told this...And this never rang any alarms to the Pharmacy or Doctors... Because the wording said "AS NEEDED ~ take 1 three times a day". <br /><br />How scary is that... I had to go have a E.K.G. to check for any inconsistencies. But that we will never know if there is any permanent damage done. Of course, she told me to stop the Xanax and not to take it any more... I also had to cut back on 2 other medications... So, besides being scared and angry. I am sick to my stomach, going through withdrawal. Shaky, nauseated, heart racing... Wow, this is fun!<br /><br />I am sharing this story with you, not because I want you to know what meds I am on, or to laugh at my withdrawal craziness. I consider myself very lucky. I am hoping you will take this story and take a look at all your medications. Research, Call your Pharmacists, your Doctor's, etc.. and Learn about any <span style="font-weight:bold;">INTERACTIONS</span> there may be. <span style="font-weight:bold;">Be Aware of what can happen and be your own Advocate. Tell this to other people so that they never find out before it is too late. </span><br /><span style="font-weight:bold;">Link to Drug Interaction Checker:</span><br /><a href="http://cpref.goldstandard.com/inter.asp?r=8133">Drug interations</a>Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com2tag:blogger.com,1999:blog-590366782977140198.post-70889148296073127492011-02-10T13:38:00.015-06:002011-02-10T17:13:41.678-06:00MSunderstood<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-KyBt0JBAYTM/TVQ-D5AaHXI/AAAAAAAAAlk/IbUnOpRMbWc/s1600/misunderstood.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 256px; height: 192px;" src="http://4.bp.blogspot.com/-KyBt0JBAYTM/TVQ-D5AaHXI/AAAAAAAAAlk/IbUnOpRMbWc/s400/misunderstood.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5572146875527208306" /></a>
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<br />I talk to so many Fellow MS'ers everyday and I listen to what each has to say. Life with <a href="http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/what-is-ms/index.aspx">Multiple Sclerosis</a> is a Day to Day battle. Some days may be better then others but even on those days we have pain and still carry <a href="http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/depression/index.aspx">Guilt and Depression</a> everyday.
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<br />We carry our own guilty feeling and battle our own depression every hour of every day, but we also carry the guilt and depression brought on by our loved ones. There are some that have very understanding loved ones, but even they will slip at some time with a comment or two. Here are some of the most major MISCONCEPTIONS and random quotes from some of the people I have talked to and I have faced myself. I want to add some clarity to those misconceptions.
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<br />I want to start with a quote from a friend I just met with Multiple Sclerosis.
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<br /><span style="font-style:italic;"><span style="font-weight:bold;">" Tara, How do you do it? I survived Cancer and then a few years later I was diagnosed with Multiple sclerosis. The battle with Cancer was a walk in the park compared to Multiple Sclerosis".<blockquote></blockquote></span> I couldn't believe I just heard her say that. Here as soon as I heard the words Cancer I felt guilty myself and was thinking "Wow, there are people with diseases worse then me and I felt ashamed and guilty, but wait...<span style="font-weight:bold;">"fighting Cancer was a walk in the park compared to Multiple Sclerosis"???<span style="font-style:italic;"></span></span> She then went on to say, <span style="font-weight:bold;">"I am a quadriplegic now because of the MS".<span style="font-style:italic;"></span></span>
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<br /><span style="font-weight:bold;"><span style="font-style:italic;">"You are Just LAZY"<span style="font-weight:bold;"></span></span></span> - Can you believe that people would just blatantly make that comment? Well don't be. I was stunned that some people hear those words from their Friends and Family. While others hear the same comments but not so harsh. For instance, <span style="font-weight:bold;"><span style="font-style:italic;">" Your home all day while I work and then I have to take care of everything here at the house. I wish I could just lay around for a day or two".</span></span>
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<br />Answer : There is nothing we want more than to be able to get up and clean the house, go outside and play with the kids or spend more time with the family. We feel guilty and depressed about what we can or can not do. There is not one of us MS'ers that said "when I grow up I want to be sick with a disease that would change and drastically affect the rest of our lives. When you see someone with Cancer, or a person with an amputated leg. You would never think to make that comment. So why is it OK to say it to someone with Multiple Sclerosis?
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<br /><span style="font-weight:bold;">"You never come out anymore so I just stopped inviting you". "We can never make plans because you never know how you are going to feel"<span style="font-style:italic;"></span></span>
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<br />Answer - In our heads, we would love to make plans to do something. It gives us something to look forward to. In reality, we know that by making the plans there is a GREAT possibility that we will have to cancel or we are <a href="http://www.mult-sclerosis.org/mssymptoms.html">symptomatic</a> and would make those plans miserable. There are so many of us that have lost friends especially due to this situation and some even have lost family members. If only there was a way for Non MS'ers to feel what we go through all day and night, I think Non MS'ers would understand.
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<br /><span style="font-weight:bold;">"Maybe if you would exercise more and get out of that chair or bed, then you would feel better"</span>
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<br />Answer - Well, No Shit Sherlock.... (Sorry for the language) Isn't that the case for anyone? You don't think we have that go through our heads every minute of everyday. When you (Non MS'er) complain that you have to go mow the grass or go play catch with our kids. We would do anything to take your place. That of course isn't possible. And on the off chance that we are having a good day, we do go for that walk, or try to clean, or do something active. We know that we are going to suffer for it later that night or even the next few days. I am one that does whatever I can fit into a day on my "Good Days". To me it is worth having to suffer the consequences for a few days.
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<br />One of my favorite's <span style="font-weight:bold;">"But You Look So Good".<span style="font-style:italic;"></span></span>
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<br />Answer - Thank You and of course "I look good" our symptoms, for the most part are all internal and unseen in other's eyes. This is where, in my opinion, that Educating people about MS would be wonderful. You can't see most of our symptoms and either can we. One example is the "Pins and Needles" sensation that most of us feel. It's not like we have pins and needles sticking out of our skin... It is weird to explain and I am not a doctor. The best way to describe it is like there is an <span style="font-weight:bold;">imaginary person<span style="font-style:italic;"></span></span> rolling cactus's up and down our body every few minutes constantly. There is a whole scientific definition as to what is going on and how to explain what the reason is behind this, but my point is to say it in laymen terms so it makes it easier to understand.
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<br /><span style="font-weight:bold;">**HINT**~</span> If you ever meet someone with MS, Fibromyalgia, and many other diseases. Don't ever say "But you Look So Good". It is the most dreaded words to hear out of someone. Personally, I just cringe and want to punch the person in the gut and let them react as anyone would in pain.... But because we don't see the pain, say to them..."Oh, But you look so good" and walk away.
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<br />Making the comments of...<span style="font-weight:bold;">"I know someone else with MS and they don't have the same issues as you. Why can't the Doctor's fix you and give you <a href="http://www.mult-sclerosis.org/mstreatments.html">medications</a> to make you feel better"?<span style="font-style:italic;"></span></span>
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<br />Answer - First of all there are different types of Multiple Sclerosis. There are also some that are more aggressive or <a href="http://www.mult-sclerosis.org/mssymptoms.html">symptomatic</a> than others.
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<br />I think that when someone with MS,Fibromyalgia, or any other disease is diagnosed, Family and Friends should have to take an obstacle course, that would make them feel what we feel (Physically and Mentally. I am not saying this in a mean or vindictive way. I just truly believe in my heart, that then and only then will people understand us better and only then, will anyone understand even the slightest, what living with a disease or handicap/disability is like. I could go on and on with more <span style="font-weight:bold;">MSunderstandings</span> but it all boils back to the same answer. <span style="font-weight:bold;">"You will never get it, until or unless you get it"</span
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<br />***The best thing a "loved one" can do is learn, educate yourself, and listen. By learning about the disease, it will help with the <span style="font-weight:bold;">MSunderstandings <span style="font-style:italic;"></span> </span> and keep good relationships with your loved ones.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com2tag:blogger.com,1999:blog-590366782977140198.post-66155837330763485582011-01-06T13:36:00.002-06:002011-01-06T13:38:46.137-06:00How an Animal Can Affect Your Life Forever<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_Pb9x0V3mu_M/TSYaMz6aOmI/AAAAAAAAAk0/gffRSoX41aA/s1600/Sheba.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 274px;" src="http://2.bp.blogspot.com/_Pb9x0V3mu_M/TSYaMz6aOmI/AAAAAAAAAk0/gffRSoX41aA/s400/Sheba.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5559159597431405154" /></a><br />To My Baby "SHEBA"<br />I, not long after having a baby and getting married, had the desire to have a dog. I am an impulse person... Need I say more?In 1992 we saw an add in the paper just saying that a farmer's dog had puppies and was selling them for $50.00. We drove out there to see the puppies. All I knew was that the Mom was a Golden Retriever and Dad was a Labrador Retriever. Mom had a big liter and I think there were 3 left. 2 really playful and out going and cute and so tiny and 1 that looked to be about 4 or 5 months old. Come to find out she was the biggest of the liter and nobody would take her because she was so big. <br /><br />So, that is who I focused my eyes on and chose to take home. She was big and fluffy haired and dark black. She was my baby... She was there for me for 14 years. Through 3 houses, 2 more babies born, my sick son's, when I was tired, sick, alone in the house, etc... She grew over the years and ended up being 110 pounds and the height of a kitchen table. My daughter would ride on her back when they were both younger. The Vet had told me that Sheba is so big but reminded me of the fact that she probably would not expect more than 8 or 9 years. Apparently the size of a dog matters on life.<br /><br />In 2006, I became sick. I was so busy with life and my new job as a Realtor that I didn't take the time to go see a Doctor. As the year went on, I became sicker and more symptoms. Sleeping 18-20 hours, struggling to walk, in so much pain. Sheba would spend all day and night by my side. The Arthritis in Sheba had gotten so bad that she could no longer go up the stairs to my room. In late 2007 after being Diagnosed with Multiple Sclerosis and Fibromyalgia, I had an MS exacerbation. I was stuck on the couch bed down stairs for a little over a month. Sheba was in heaven. She slept next to me every night. I finally started feeling better and decided it was time to go back upstairs to my bedroom.<br /><br />There, was a really bad storm that night. The very first night back in my bedroom. Sheba was always terrified of storms. It never dawned on me, all I could think of was sleeping in my comfy bed. All Sheba could think of was sleeping next to me. Sheba climbed the 13 stairs and lost her balance.she fell all the way down. I went running to her, and saw that she was not able to walk. I think she broke her hip. Anyways, I wasn't strong enough to move her so we made a bed right at the bottom of the stairs. I stayed with her, crying and apologizing to her. I had gotten up a few times and she would try to follow. I would lay back down with her... thinking.<br /><br />I had asked my, at the time, best and longest friend, "How will I know when it is Sheba's time? What are the chances she will just fall asleep and never wake up? She always said... Tara, you will know when the time comes. I prayed all night that she would just go to sleep. I looked her in the eyes, and she put her paw on my leg and I could see it in her eyes. It was time. We took her to the vet and.....<br /><br />My baby "Sheba" and I laid together. Her head in my hands and our noses touching as she fell asleep. As sad as this day, month, year, 4 years has been. I made a promise to her when that Vet told me years earlier.. "Sheba, you have stood by me every moment and been there for me when I have needed you. I will do the same for you. I miss Sheba terribly, but deep inside, I kept my promise to her as Dogs tend to promise their owners from day one.<br /><br />R.I.P. Sheba 08/07Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com2tag:blogger.com,1999:blog-590366782977140198.post-25304429427846726892011-01-05T14:57:00.004-06:002011-01-05T15:08:44.493-06:00Attacking the Aftermath from all the Holidays and also organizing life. Especially when there are a lot of Flare Ups going on~<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpNKgh2CoqW5FJAjg2vdjo0aZgkTe5L1YXrYulkT_5nJe56ZoS8NDpZBtPaaNN8qLWrPMdAYYtGB8NQ_TjSNrhjzDjltsOY8trBu_MVqENn5AdJtkzeLF4wSoQXYEPSGoz_RqwetmiXmE/s1600/2011.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 219px; height: 231px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpNKgh2CoqW5FJAjg2vdjo0aZgkTe5L1YXrYulkT_5nJe56ZoS8NDpZBtPaaNN8qLWrPMdAYYtGB8NQ_TjSNrhjzDjltsOY8trBu_MVqENn5AdJtkzeLF4wSoQXYEPSGoz_RqwetmiXmE/s400/2011.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5558806286215444802" /></a><br /><br /><span style="font-weight:bold;">The Holidays are over!</span><br /><br />Holidays/Vacations bring on <span style="font-weight:bold;">good & bad stress</span>. Good stress can be just as hard on us as bad stress's. I, like quite a few of you, have been fighting the MS and Flu's since Christmas. All the Chaos and build up needs to start being tackled. I strongly believe in baby steps and being proud of what you accomplish each day. I have chosen 1 thing to tackle a day. I am reaching that goal. Reaching that goal makes me feel part of this family and able to have some control but also achievement.<br /> <br />Yesterday for instance - I knew I wasn't going to be able to do physical stuff but I had to fill out the packet for Disability.. So, I did it and had my daughter mail it. <span style="font-weight:bold;">-Completed Task</span> <br /> <br />Today - Tackled dishes, and organized papers and bills sitting around everywhere. Can't afford to pay them but I now have them all together and ready to go. <span style="font-weight:bold;">- Task Completed</span><br /> <br />These tasks are by no means HUGE but they have to get done and by doing each one of these, it is slowly organizing and cleaning out areas but also organizing my brain a little. <br /> <br />Besides the Holidays just ending, we are getting deeper into the Winter "wintertime blues", tax time, cleaning, hobbies,weight loss plans, all the New Year Resolutions that we already probably have stopped, etc... we still have a lot on our plates. <br /> <br />Keep an open mind and break things down to ONE thing at a time (<span style="font-weight:bold;">Baby Steps</span>)<br />Depending on the day and how you feel, hit the harder tasks on the good days and not so hard on the worse days.<br /><br /><span style="font-weight:bold;">~~Be PROUD of each accomplishment.~~</span><br /><br /><br /><span style="font-weight:bold;">HINTS Tips and tricks...<br /> </span><br />*Use a journal to keep track of what you need to do and how/when you will attack that goal. When you have completed it.... mark it off the list. - sometimes just seeing it marked off, makes you feel achieved. (If it is a big goal, break it down into steps)<br /><br />*If cognitive is an issue, use a voice recorder or a calendar<br /><br />*I tend to break dishes every time I wash them.... TRICK - I bought Gardening gloves that had nubbies on the fingertips. It allows me to grasp better and not drop them.<br /><br />*<span style="font-weight:bold;">Putting Away Christmas Decor</span>.. Get rid of the old stuff that you never use. Take it to Goodwill or Amvets. We all have one or two of those boxes we bring up every year to decorate and we never use that same stuff. Let someone else use it and enjoy it and that empties an area out of your home. (And it is a write off for your taxes)<br /><br />*<span style="font-weight:bold;">Did I mention Tax time????</span> - For a lot of us, that alone brings on stress. Start putting stuff together in one binder or folder. For some of us, it means tax rebates - Work fast to get your stuff together and taxes done as early as you can. The sooner you turn them in, the faster you get your money. For those of us that have to pay our taxes...... Take a break, we have til April 15.. LOL<br /><br /><span style="font-weight:bold;">I can't STRESS it enough...... BABY STEPS!!!! We can all do this and we will all make it through this</span>Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com1tag:blogger.com,1999:blog-590366782977140198.post-49962612088711342322010-10-13T20:38:00.001-05:002010-10-13T20:43:42.848-05:00Find your strength..Life Goes On!!!!!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_Pb9x0V3mu_M/TLZex27VE2I/AAAAAAAAAkY/xgprfTOyhD4/s1600/images.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 210px; height: 177px;" src="http://1.bp.blogspot.com/_Pb9x0V3mu_M/TLZex27VE2I/AAAAAAAAAkY/xgprfTOyhD4/s400/images.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527709803294823266" /></a><br /><br />Last week was crazy! I started the week with 2 doctor appointments. 1 with my neuro and 1 with my regular Doctor. By the time I left the Neuro, I was scheduled to see 5 other Doctors and a boat load of testing. He said I have progressed to the point that he feels I am Primary Progressive. He is waiting for the testing to confirm it. I had to see an ENT only to find that I am losing my hearing to a pretty good degree and that my eardrums were almost flat lined. So, of course he wants further types of MRI and MRA to rule out a tumor on the carotid artery that would cause the hearing loss, but he also said that MS can cause this as well. Come to find out, it runs in my family... Not sure what this means for me but if they find their is a tumor on the Carotid artery that would mean less blood flow, which would have to be surgically treated. So my question would be, is this what the CCSVI is all about and would I be able to get it since they are doing it for hearing loss. If it is the MS, then I guess that will just be something I have to live with. by the time the appointments were over for the week (I have a whole calendar filled of further appointments) I didn't think I could handle any more. I was so worn out.<br /> <br />But Thursday started the Pep Rally for the High School Home Coming. Saturday was Parade, Football game and then getting both my older kids ready for homecoming. My Mom and Dad came to help and thank God they did. I forgot Randy had a Bachelor party to go to. I stayed up until 4 in the morning with the kids and all I could think about was how quickly my children have grown up. I don't think I would want to go back in time and relive it again, but I wish I could stop the clocks now. I believe I have taught my kids to be strong, respectful, and that they can do anything they put their mind to. I believe they have learned that.<br /> <br />I was thinking the other day that my kids will eventually leave and move on with their lives. I wish and Pray that the MS will get controlled for me enjoy these last few years of having them with me. I don't know where this is heading, but I learned something...<br /> <br />No matter how hard or bad wr are fighting the MS, When it comes to my kids..... I always have the strengthLiving Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com3tag:blogger.com,1999:blog-590366782977140198.post-72315623745936776812010-08-26T13:24:00.001-05:002010-08-26T13:30:01.919-05:00This Is Not The Way My Life Was Supposed To GoI have to admit that MS can be easier to handle, cope, and accept some days, but other days it can feel like the world is caving in on you. That is where I feel I am right now. Not all of it is the MS, some is the economic times but either way I look at it, it still falls back on the MS.<br /><br />My MS has been extremely active this year. I have not had any recent MRI's to see if it is progressing or more permanent damage done, but my life has been extremely affected because I haven't had too much down time. Down time is kind of a funny way to say it, because what I mean is not many good days. Because of this I am not working, and we are trying to raise a family of 5 on just my husband's income. I know a lot of people are having to do the same thing because of the economy. There is a difference though. Besides the normal bills, car payments, rent/ house payment, groceries,clothes for the kids and their needs,school fees and school related stuff..We also have to pay for loads of medications, shots, more doctors visits (actually a lot) and special needs equiptment. <br /><br />I realize that jobs are far and few right now, but because of my issues, I feel as though I am not pulling my weight. I did for many years. I find myself saying a lot more now, <strong>"THIS IS NOT THE WAY MY LIFE WAS SUPPOSED TO GO"</strong>. Now if I looked at it from the religous stand point, then yes, apparently this is what God wanted for me. But how can that be? I can't imagine God wanting something bad for me. Which leads me to believe that I am supposed to be learning something from this or maybe a punishment for something in my past that I don't know I did. If I look at it from my stand point, I stick with my view of "This was not the life I was supposed to have". I was active, I took care of the cooking, cleaning, the kids, the bills, the homework, the groceries, the yard and ponds. Not because I had to, but because I loved doing it. I have a wonderful husband that would have done it but I chose to do it all. Along with all of that: I was very active with the community and neighborhood watch captain, active with the schools and PTA, was always worrying and trying to save the world in anyway I could. Some people claim that Multiple Sclerosis is most found in people with Type A personalities. I guess, in my case that is true. I was always told to stop worrying about others so much and worrying about the what if's.... If I didn't have something to worry about, I would borrow other people's worries. My Mom and I used to joke about that all the time.<br /><br />Now, as I sit here, I wish I would have listened. maybe I wouldn't be in this postion. No matter how hard I have tried, I still can't stop worrying about stuff. I worry more about my family but still spend a lot of time worrying about others. I guess that is just me. I don't think that will ever change. I always have to figure out the WHY???? So, I have come to the conclusion that this diagnosis was not a punishment, it is now something that I have to learn to deal and cope with so I can help other's with MS in some way or another.<br /><br />I worry about our bills, groceries, utilities and so on, but as funny as it is, you would think we would qualify for assistance somewhere somehow, but we don't. We are always $40.00 - $60.00 over to qualify for any assistance. I have no clue how they figure that out. It is very hard for me to ask for help or even accept help, because I am usually the one always helping others. And when I really do need it we don't qualify. I don't know where this road/journey is going to take us or how we are going to survive it, but deep down I know we will. We have to... Our kids depend on us and I will make it work... As I say this, I laugh because I have no idea how this is going to work but I will figure it out.<br /><br />I carry a lot of guilt daily for putting my family in this situation. If I wouldn't have gotten this disease, my family would't be suffering the consequenses of it. My kids would have their Mom around more for them, not sleeping because of the severe fatigue. I would be working and being able to pay the bills, hopefully. I would be taking care of all the things I used to.<br /><br />My Dream:<br />Since I spend a lot of time laying down, I have nothing to do but think. I think of all the things I wish I could do but most of all, I think about how I can help my fellow MS'ers. I have come to the conclusion that if I had it my way... I would be out helping the Newly diagnosed and their families. I would help them understand, prepare, but encourage them to fight this disease. I would help their families understand MS and help teach them how they can be supportive to their loved one. I would open a donation drive of clothes, food, meds, money and so on to help those families when they hit rough times. So they are not having to chose between Medicines and groceries, or clothes for their children and school supplies vs. utility bill. While doing this I would push for more information about this disease. There are over 200,000 Americans diagnosed with MS and many more each day being diagnosed. The average age used to be between early twenties- mid thirties and majority being women. Boy how that has changed. They are finding yound children even toddlers with it and a lot more men being diagnosed along with older ages. And yet, if you ask people (the public) about MS most don't know much at all. The surprising part is that those same people that don't know much at all will admit that they know of at least one person with it. I agree that money should be going to research for MS. I also believe that the cure is out there and when they find it, that will be a huge breakthrough for hundreds of other Autoimmune Diseases. But until then, countless numbers of lives have been lost (due to complications of MS) and quality of lives affected.<br /><br />Until then, I will be trying my hardest to achieve MY DREAM along with trying to survive the economy and times. I truly believe fellow MS'ers believe and would agree that this is not the way "our" lives were supposed to go.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com7tag:blogger.com,1999:blog-590366782977140198.post-5303141337193327522010-08-20T15:36:00.000-05:002010-08-20T15:36:01.720-05:00LDN Update and CCSVIAs I wrote about awhile ago about Low dose Naltrexone (LDN), I was telling about what I have seen in improvements and no- improvements.<br /><br />I always have to remind people that when I started LDN, I was looking for huge improvements with the MS and Fibromyalgia. I also was hoping for changes with the Chron's. I have been on LDN now for a little over 3 months. I have found that I am stuck at 3.0mg. When I up the dosage things seem to start declining again. I am shocked that the LDN at this level has helped the Chron's and minor changes have occured with the MS and Fibro. I don't know if I should call them minor, I think I would say that LDN has helped those disease symptoms, just not the symptoms I was thinking they would help with. The changes/ improvements have been enough that I have no intentions of stopping the LDN. I also feel strongly enough to say that I wish I knew about this treatment 4 years ago. I feel that if I would have started with it, I probably would not have the permanent damage that has already taken place. If and when someone newly diagnosed comes to me, I will tell them to look into this treatment. <br /><br />The hardest part, is that when you are first diagnosed with a disease, you feel like your life is in the hands of the Doctor. You trust that they are doing everything they can to treat you to the best of their ability. I disagree. You have to be your own advocate. You and your doctor must work as a team. Don't ever be afraid to question them or bring new ideas to the table. If you feel that you are not being being listened to or getting answers to the questions you have, then it is time to find a doctor that is right for you. I am in a situation that my insurace tells me where to go. I have the best Neuro at the clinic but we do not see things eye to eye. Not many Doctors/ Neuro's will prescribe LDN at this time. They claim that it is not approved by the FDA so they don't feel it works. Well, maybe they are right for some people but when you have a disease like MS, there isn't many treatment options. My Neuro seems to think the only treatment is Steroids and then medications to treat all the symptoms. My suggestion to my Fellow MS'ers is to research and learn what all there is out there and decide what you feel is right for you. Sometimes doctors will say No and they will have a good reason that will make you change your mind. If not then go with your gut.<br /><br />CCSVI is the big rave right now. I am learning what I can about it. I had an open discussion with Fellow MS'ers on Facebook the other day. Wow, it is a heated topic and many opinions. I don't really know where I stand on this procedure. I do think that there is proof that it does help some patients. It is too early to tell what the end result is for them. At the moment they are doing great and seeing a huge difference in their lives. A stent and/or angioplasty makes me wonder if they will need to keep repeating this procedure throughout their life. It may be worth it if it gives them a better quality of life. The discussion became very heated, which leads me to believe that there is more studies and research to be done.<br /><br />What I have gotten out of everything is that this has been a great year in advancements towards finding either a cure or better treatments for us. And that in itself is great news.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com0tag:blogger.com,1999:blog-590366782977140198.post-68189251079182817342010-06-29T14:18:00.000-05:002010-06-29T14:19:24.349-05:00Low Dose Naltrxone UpdatesLDN- Updates at 2.5 weeks and at 6 weeks<br /><br />I am asked daily by my friends how I am doing on the LDN and what changes I am seeing. So,I decided to write, now that I have been on it for 2.5 weeks. Before I do, I want to thank everyone for supporting me and helping me get all the information I needed and still am looking for. <br /><br /><strong>2.5 WEEKS</strong><br />Before I started LDN, wow 2.5 weeks ago. I was in a 10 week major flare up. This flare up caused me to go through 2 rounds of steroids only to continue to get worse. I was to the point of almost going into a wheelchair. I was in so much pain from all the spasms and joint pains, besides the MS the attack kicked in my Fibro along with the chron's. so, basically I was very miserable and crying constantly. I guess, now I will admit that I was hating life and at a point that if I was going to continue like this... I don't think I wanted to continue nor did I think I had the eenergy to fight through this attack. <br />(wow, tears already are filling up in my eyes) <br /><br />During the massive attack, I met so many more wonderful friends here on Facebook, that taught me about a drug called Low Dose Naltrexone (L.D.N.). I listened to them and started to research the best I could as the MS had really messed with my comprehension. I went to my Neuro and he said he wouldn't prescribe it because it was not approved by the F.D.A. and in the last 20 something years he prescribed it one time to a patient and that patient felt so well, that he stopped all his MS shots and he got worse, so my Neuro would never prescribe it again. I went to my G.P. who basically said she didn't know much about it and because it was an Opiod drug that I needed to see a Psych Doc because they are usually the ones that prescribe that. So, of course, I was getting worse and none of my Doc's would do something, or should I say try something that I felt might really help me. What could it hurt to try? <br /><br />Now here I am 2.5 weeks later... <br />I am sitting here typing this with a smile on my face. I am able to walk just fine without any walking device. My muscle spasms are still present but not nearly as bad as they were. I even have times that I see the rolling spasm and feel nothing. My pain level which was normally between an 8-12 on a scale of 1-10, is now probably between a 2-6. Which is wonderful. I really can't say that I see new things daily but I look back over a few days or a week and that is when I really can tell all the changes. I no longer am woken up 2-4 times throughout the night because of the pains. Now, I sleep good throughout the night and when I wake up (on my own) the pain is there, but the pain is not waking me up. That makes a big difference. I still need to take all my meds in the morning and after they kick in, I feel better and can go on with my day. My friends have said that I havelost the dark circles under my eyes and the pale color and now I have life back in my face. they are shocked to see me glide through the house, like nothing, just to get a towel for my son. Yes, I fell 1 time about a week ago and it was for no other reason then me rushing too fast through the house. It is hard to tell the difference between the pains of MS and Fibro sometimes because they usuallyare together and I am so used to it. But I believe the L.D.N. is working well with both of those diseases. I am still not at the normal dose, so I am hoping that in time, it will start to work on the Chron's as well. I have read that I need to get closer to 4.0-4.5mg for it to help with that. I may not get to that level because I normally have such horrible spasms, from what I have read, the closer I get to 4.0-4.5mg it may make the spasms get worse. So, we will have to wait and see. <br /><br />Within 3 days of starting the L.D.N. I was out in the garden planting. which is something that I haven't done in over 4 years and was always one of my favorite things to do. I have spent a lot of time outside, of course until we hit the 90 degree weather earlier this week. During those days, I did laundry, dishes, organized some ofr the rooms in our home, did a bunch of paperwork, and a lot more. <br /><br />I have learned that L.D.N. works so well and so fast that it is hard not to just take off and do as much as you possibly can. For people that might read this that don't have a condition like this or these. When you live your life on a day to day basis, never knowing what each day will bring you? Or what you will and will not be able to do. And all of a sudden you feel like you did before being diagnosed (it's been so long, that I really don't remember what that felt like) You don't want the feeling to end and you are so afraid that it will be gone the next day. So you take advntage of it and you overdo it. Only to find the next day and the day after that you still feel good. It is a hard adjustment. It is something I have to be reminded of often... Don't overdo it. I still have symptoms I deal with daily and have all hopes that in time they too will diminish some or all the way. I look forward to seeing where the L.D.N. will lead me and so many other people with Autoimmune diseases. <br /><br />While on the subject, I learned that not only does it help with all the diseases that I have listed many many times. I learned that they are now saying that L.D.N. has helped with infertility. Wow, that is amazing for all the couples in the world that would like to have children and were told they couldn't. Maybe L.D.N. will help them as well. <br /><br /><strong>6 WEEKS</strong><br />Over the last 3 weeks I have had a lot of stress in my life. Our family lost one of our best friends. We were very devastated. 4 days after his funeral we had to prepare for a family reunion that we haven't seen in over 10 years and we were driving. My schedule was very screwed up. There was good and bad stress during that time. I also had the flu during this time.<br /><br />Needless to say, I have learned that <strong>STRESS</strong> can and will overpower the LDN. About a week ago things were back to normal, meaning we were home and trying to get back on routine. The heat has been very hard to deal with and we have had storms almost daily. I would have to say that I have not seen so much help or improvement from the LDN during this time. I started having really bad prickly sensations and pretty severe leg pains again. I do have to remind everyone that I am not just dealing with MS. I also have Fibro and a rarer form of Chron's. The LDN, I can tell is working but I can't point my finger as to what it is doing. I know I would be much worse without the LDN. I did go to see my General Practioner who manipulated my meds for the Fibro and so the prickly sensations are slowly fading. As for the severe Fatigue, I have No clue. I have a call into the Neuro to see if he has any suggestions on that and also the leg pains.<br /><br />To sum this up. My feelings on the Low Dose Naltrexone is... <br />Depending on the diseases you are treating. With Multiple Sclerosis and Fibromyalgia, at first, there are very good chances that there will be significant changes immediatley. However, then it starts working on things inside of you that is needed but not so noticeable. LDN is something that has to be continuous and takes time sometimes just a few weeks and sometimes months. I have noticed things like my hair and nails are growing and looking better, the rings under my eyes are gone, I feel like I have life in me. But at the same time I still have these diseases and LDN can not take that away. If I hadn't had the stresses over the last 3-4 weeks I do feel I would still be on a roll as I was before the incidences. I will continue to update on how I am doing as some of the stressors are going away.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com2tag:blogger.com,1999:blog-590366782977140198.post-77934915995149404442010-06-26T00:51:00.000-05:002010-06-27T00:52:15.765-05:00Low Dose Naltrexone and Autoimmune DiseasesI was diagnosed with Multiple Sclerosis in March of 2007. I also have Fibromyalgia and a rare forms of Chron's. When you are first diagnosed with Multiple Sclerosis, you are not given a lot of information. Basically you are told just a few basics and then told or talk to about what type of MS Shots you will be taking. A very big misconception is that, the general public believe you can be treated for MS. When actually there is no cure for MS. The shots are to help protect future permanent damage and some shots also help repair the mylein sheath, that protects your nerves. As for all the symptoms, the Doctor's only can try to give medications to alleviate the symptoms but a lot do not help. Also there are so many symptoms and to different severities.<br /><br />Over the last few months I have learned about a treatment that has been around since the 80's but hasn't been approved by the FDA. The speculation is that the medication would take so much money away from the Pharmaceutical Companies. There probably are other factors, however, this is the main reason. LOW DOSE NALTREXONE (LDN) has been around since the 1980's and has been proven to be very helpful for many <a href="http://www.lowdosenaltrexone.org/index.htm#What_diseases_has_it_been_useful_for">Autoimmune Diseases and other diseases</a>.. It is amazing to me how many autoimmune diseases there are. What is even more amazing is how LDN has improved so many diseases. Autoimmune diseases, Cancer's, even Endometriosis. With all the good things that have been proven from the use of LDN the Government along with the Pharmaceutical Companies and most Doctor's will not prescribe it nor will they push for further testing of this drug. Luckily, LDN can be purchased without a prescription. I do believe that when you have a disease that it is important to work closely with all of your doctor's. There are times that your Doctor's don't seem to look into other alternatives. They will just continue to push more and more drugs to work on the symptoms. I was turned down by my Neurologist to prescribe LDN. I did chose to purchase it and give it a try. I figured that anything is worth a shot. Sometimes I believe that you have to trust your gut instinct and try other therapies if you research and feel strongly about trying something different.<br /><br />I started LDN almost 2 months ago. I have noticed changes in all three diseases. I have talked to other fellow MS'ers that have had quicker responses due to only having to fight one disease. There are very minimal side effects from LDN. Basically they consist of possibly Vivid Dreams and Trouble Falling asleep. those are the most common side effects. they have also shown that it is safe for children as well as adults.<br /><br />LDN is made from an opioid blocker. If you chose to try LDN, you can not be on any strong pain killers. Examples.. Vicodin, Morphine, Percocet as the LDN will only work to fight the effects of those drugs. LDN is compatible with <span style="font-weight:bold;">most</span> MS medications and treatments. It was believed that LDN could only be used with Copaxone, however Dr. Bernard Bihari ( the founder) has done enough studies showing that LDN was compatible with all the CRAB shots including Tysabri. Again most doctor's will disagree with this. If you think about how much money we spend monthly on all of our medications for our diseases and to know that there is a treatment that over time would eliminate many of the medications. Then you will understand why the FDA won't approve it and why the pharmaceutical companies will not spend time testing it. Sad but True.<br /><br />In my own opinion, I feel that everyone that is diagnosed with an autoimmune disease along with any of these other diseases. LDN Should be the very first treatment started before being put onto all of the other drugs. In this article, I was not and am not going to get into my use with LDN. I will say that I noticed GREAT changes immediately. I hope to continue to see more changes as time goes on. <br /><br />We all must remember that there is NO cure for MS. So, LDN, in no way is a cure but comes very close to making you feel as though you are cured. I think the only downfall is that you feel so much better on LDN right away that it feels as though you have regained a bunch of lost years of pain and sickness. There are very quick and fast responses but at the same time there are so many issues inside your brain and body and your cells that are being fixed that you do not always notice a big change everyday. After a few days or at the end of each week you will look back and notice all the changes that occurred that you didn't notice each day. <br /><br />In my next few blogs, I will give more information on how to take the LDN, when to take the LDN, how to approach your Doctor's to try to get them on board, etc... feel free to send me messages if you have more questions.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com2tag:blogger.com,1999:blog-590366782977140198.post-20403178515528674792010-05-18T21:43:00.001-05:002010-05-18T21:47:06.319-05:00LDN Research Trust : LDN Research Trust<a href="http://www.ldnresearchtrust.org/">LDN Research Trust : LDN Research Trust</a><br /><br /><br /><strong><strong>This is a Wonderful link about LDN. It has lots of great information on this site. I started taking LDN a week ago today and am having positive results. I will be posting a blog diary shortly along with a lot more information on it.</strong></strong>Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com1tag:blogger.com,1999:blog-590366782977140198.post-85812181066845908602010-05-02T17:36:00.002-05:002010-05-02T18:05:28.633-05:00Low Dose Naltrexone (LDN) - My JourneyI know that when I started blogging a few years ago, I classified myself under Multiple Sclerosis only. Since being diagnosed with Multiple Sclerosis in March of 2007. I have also been diagnosed with Fibromyalgia along with Chron's. Not the typical Chron's that we all have heard about. Mine is different. It took a few years and a couple specialists to figure out the issue but apparently my large intestine is allergic to foods and waste. So to sum it up simply. Just like someone with Asthma, the esophagus swells closed. My large intestine does the same thing. Odd, I know, but I am relieved they were able to figure it out.<br /><br />With that said, I am opening my blog up to all three issues. <br /><br />I have been in a major flare up for almost 8 weeks now. I have had 2 steroid treatments and have had no luck. All three diseases have gone out of whack, to the point that I don't know which one is causing which issues. However, with all the steroids, I have had countless sleepless nights. I have spent a lot of time researching and learning a lot about Low Dose Naltrexone (LDN). <br /><br />Low Dose Naltrexone has been around since the 1980's and has shown a lot of good results for many autoimmune diseases. I will give links here shortly as to all the massive amounts of information and all the diseases that it has shown to work on. I was very disappointed that my Neurologist turned down the idea without any good reasons at all. After talking to many people I was informed that most Doctors will not prescribe it because it has not been approved by the FDA. Mostly because it is so cheap to make and buy that so many pharmaceutical companies will lose a lot of money. So, they are not doing much to research more on it. The cost of LDN if prescribed is 30.00 a month out of pocket. Insurance does't cover it. Crazy huh? Anyways, since I was turned down, I did find a way to get it and will be starting on it once it arrives. Which will be the end of this week sometime. <br /><br />I will be journaling on the side effects (which are very minimal if any, from the information I have read) I will also list the good, bad, and ugly effects that I see while on this. I have very high hopes and with luck will help with all three autoimmune diseases. <br /><br />Hopefully if there are improvements, more people will push and fight for this treatment. Of course, I will always have all three diseases, and by no means is this a cure but in the information I have read... This is the closest thing we have. I will keep you all posted on how this goes. Along with posting links for you to read and learn more about Low Dose Naltrexone.<br /><br />These are some of the Diseases that they have found LDN to be helpful for. But Refer to the links provided to find more information out and how it has helped.<br /><br /><br />Low Dose Naltrexone<br /><br />FDA-approved naltrexone, in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders.<br /><br /><br />ALS (Lou Gehrig's Disease)<br />Alzheimer's Disease<br />Ankylosing Spondylitis<br />Autism Spectrum Disorders<br />Behcet's Disease<br />Celiac Disease<br />Chronic Fatigue Syndrome<br />CREST syndrome<br />Crohn's Disease<br />Emphysema (COPD)<br />Endometriosis<br />Fibromyalgia<br />HIV/AIDS<br />Irritable Bowel Syndrome (IBS)<br />Multiple Sclerosis (MS)<br />Parkinson's Disease<br />Pemphigoid<br />Primary Lateral Sclerosis (PLS)<br />Psoriasis<br />Rheumatoid Arthritis<br />Sarcoidosis<br />Scleroderma<br />Stiff Person Syndrome (SPS)<br />Systemic Lupus (SLE)<br />Transverse Myelitis<br />Ulcerative Colitis<br />Wegener's Granulomatosis<br /><br /><span style="font-weight:bold;">Other Diseases:</span><br />Cancers: <br />Bladder Cancer<br />Breast Cancer<br />Carcinoid<br />Colon & Rectal Cancer<br />Glioblastoma<br />Liver Cancer<br />Lung Cancer (Non-Small Cell)<br />Lymphocytic Leukemia (chronic)<br />Lymphoma (Hodgkin's and Non-Hodgkin's)<br />Malignant Melanoma<br />Multiple Myeloma<br />Neuroblastoma<br />Ovarian Cancer<br />Pancreatic Cancer<br />Prostate Cancer (untreated)<br />Renal Cell Carcinoma<br />Throat Cancer<br />Uterine Cancer<br />> LDN has demonstrated efficacy in thousands of cases.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com0tag:blogger.com,1999:blog-590366782977140198.post-78384489842585770372010-04-22T14:50:00.003-05:002010-04-22T18:10:46.799-05:00"Me Day"<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_Pb9x0V3mu_M/S9CW8Pt35iI/AAAAAAAAAic/vIwOm3cegYM/s1600/April+2010+076.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="http://2.bp.blogspot.com/_Pb9x0V3mu_M/S9CW8Pt35iI/AAAAAAAAAic/vIwOm3cegYM/s200/April+2010+076.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5463032309755668002" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_Pb9x0V3mu_M/S9CZycWyk6I/AAAAAAAAAik/ZTXb2netzYA/s1600/April+2010+077.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="http://2.bp.blogspot.com/_Pb9x0V3mu_M/S9CZycWyk6I/AAAAAAAAAik/ZTXb2netzYA/s200/April+2010+077.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5463035439884702626" /></a><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGdRwVR35Nv_Gq482I6WJIz30LT6f6BvOnnUB1qL2vvAorfvcVGqBbXgn-bZ680_yZ_LhcWcwAcnrUWwM4Fee99928yTEdaApBq5obLhZXgOMICgD4yCTqOyq5Mb8PwS-o69YzO96SuFk/s1600/April+2010+082.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGdRwVR35Nv_Gq482I6WJIz30LT6f6BvOnnUB1qL2vvAorfvcVGqBbXgn-bZ680_yZ_LhcWcwAcnrUWwM4Fee99928yTEdaApBq5obLhZXgOMICgD4yCTqOyq5Mb8PwS-o69YzO96SuFk/s200/April+2010+082.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5463036281375348306" /></a><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmx9Kvy_Al-7EkKGgtRxYL7_nuMQDe6jXo3lSFGnfmLjoLJ7rxw7Q0jpuEd5Cx7ytKJCa3i26fTDfNiRd2C6gutv4xw88lNP0t9qYHZu8iMJPiBxywGr4JRo9kSMvaWGN4fNAlUbKkBcU/s1600/April+2010+086.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmx9Kvy_Al-7EkKGgtRxYL7_nuMQDe6jXo3lSFGnfmLjoLJ7rxw7Q0jpuEd5Cx7ytKJCa3i26fTDfNiRd2C6gutv4xw88lNP0t9qYHZu8iMJPiBxywGr4JRo9kSMvaWGN4fNAlUbKkBcU/s200/April+2010+086.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5463036894901793538" /></a><br /><br /><br />When my Daughter was younger, we came up with, "ME DAY". "ME Day" was our code word for telling each other we needed some time alone. When we came up with that term, She had her Daddy, 2 brothers, kids that I babysat for, along with all the neighborhood kids. Yup, it was crazy busy in our little teenie tiny home. Looking back now, I wouldn't have traded it for the world. <br /><br />It seems like yesterday but at the same time a history ago. It was back in a time of my life that I could take on the world. I was always busy doing something or worrying about something/someone. I was a Wife, Mom, Babysitter, Neighborhood Watch Captain, the "Martha Stewart" of the neighborhood, the Gardner, the Cleaner, the one that took care of all the bills/appointments/school functions, etc... It wasn't that I had to be, it just is who I was. Yes, life was crazy, but I made it that way.<br /><br />Then it was time for a change. The neighborhood had changed and things were starting to happen. My kids were affected and we needed to move. Due to the fact that all 3 of my kids had had medical conditions that had cost us a fortune, we didn't know how to move because we probably weren't going to get approved to buy a house at that time. One of my best friends told us about a property they owned in a town not too far from where we currently lived. It was a Farm home surrounded by woods and farm land. She had said we could rent from them and move there. We put our house up for sale and never thought it would sell in 3 days. Here we go, rushing and hurrying to move in to the Farm house. Funny thing is... For as much of a control freak as I am, we moved there and I had never seen the inside of it....<br /><br />Boy was I shocked, the house was really run down at the time. The people that had lived there previously destroyed it. I was terrified on how this was going to work. I was kicking myself, overwhelmed and just in awe of where to start. My best friend was now my Landlord, that was weird... However, between her and her Sister hiring people to work on the outside we scurried to get the inside cleaned and fixed. We weren't going for perfect, just livable. The funny thing for me, is I remember a few days into moving in, the kids already had started going to the new schools and I grabbed a cup of coffee and went out side. The Sun was barely up and it was super quiet. Almost too quiet. You know, the kind of quiet that makes you nervous, because it is too quiet. Especially moving from a huge city to very small town farm house. Anyways, the noise shook me. Out of nowhere I heard a bunch of MOO'S. Not just a single moo but a herd of moo's. I couldn't see them but I could hear them. I thought it was the funniest thing ever. That was almost 7 years ago.<br /><br />Seven years ago my Daughter was just going into 5th grade, 1 son was starting 2nd grade, and my youngest was in preschool 3 days a week for just a few hours. Now... My Daughter is just finishing up her Junior year and going to be a Senior in High School, my son is ending Junior High and going to be a Freshman, and my youngest son is finishing up 4th grade. I can't believe it. We still live in the same house and can't imagine living anywhere else. During the seven years of living here, actually a little over 3 years ago, I was diagnosed with MS. Since then Fibromyalgia and Chron's. My life has changed so much from what I was used to. This blog however, is not going to be about that. It just shows how life changes.<br /><br />I decided to take a "ME Day". I have had a rough few weeks and really bad few days. Today is the first time in a week and a half that I even stepped outside. I brought my camera, the computer, a basket and my Dog and have been outside for a few hours. I can't walk very far but I have missed the beautiful Lilacs 2 years in a row now and I wanted to take advantage of this time. I cut so many beautiful smelling Lilacs and put them throughout the house. I am sitting outside and there is a breeze and all I can smell is the Lilacs. It is wonderful. <br /><br />This house we live in is not just a Farm house. It is over 100 years old, it used to be an old Stage Coach Home and is just amazing. Yes, it has plaster walls, not many outlets, 1 bathroom (that just happens to be right next to the kitchen table... LOL) But it is home to us.<br /><br />As I was cutting the Lilac's it dawned on me that someone over the period of time this house has been here left me a wonderful gift that comes back year after year, and then I started to laugh. Remembering when my kids would bring me every flower they could find including and mostly weeds, and were so proud to give them to me. Of course I would put them in a cup just long enough for them to forget and then toss them away. I wondered to my self, if my Mom remembers moments like that? And then I thought to myself...I wonder if now at this age would my Mom treasure those flowers that I hand picked for her, if I brought them to her now? I know I definitely would treasure those moments too. Life changes so quick. <br /><br />Anyways, I am sharing a part of my "ME DAY" with you! <br />I have a lot of blogging to do and it will be a lot of mixed emotions and information... So, I am starting with this one.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com6tag:blogger.com,1999:blog-590366782977140198.post-77464503013884994532010-03-12T19:40:00.000-06:002010-03-12T19:40:28.827-06:00MS BluesI am in the middle of an exacerbation, or at least my Doctor thinks I am. I am having horrible muscle spasms, which is not uncommon for me. However, this time it is throughout my whole body. My arms, face, hands, etc. It is common for me to have them in my legs but not to this extent. I can not feel my feet or my legs, from my thighs down. I can feel pain but at the same time very numb. Solumedrol is the only option the doctors have but I do not tolerate it and have horrible side effects from them. So, my decision to not take them is not to be a martyr, it is that the side effects are much worse then the relief.<br /><br />I am so depressed at this moment. I normally am very positive and push fellow MS'ers to fight this diseas and not to give up. Today, I am giving in to the sadness and anger. I live in a two story house with my bedroom upstairs. I am scared and unable to do the stairs due to the pain and numbness. I can do it, I am just scared. I have been living in my room for the last 4 days. It scares me to think that my legs are going away, or at least the ability to use them the way I always have. At the moment I hate this disease and I can't stop crying. I don't even know why??? This is not like me. I feel like I am living in a world alone. I have not been able to be apart of my family unless they come up in my room.<br /><br />I think sometimes that maybe a solution is to move our bedroom downstairs. That would solve the issue of being trapped upstairs. At the same time, when I feel like this, I really don't want to be around anyone. I am not normally one to cry or be emotional, when it comes to this disease. But I have lost my inner strength. My Doctor told me a few years ago that I would most likely be in a wheel chair. Normally, I am the person that if you tell me "NO", I will prove you wrong. Yesterday my Doctor told me I should consider getting on disability. What would that do for me? I am don't feel like my life at 37 should be over, when I was only diagnosed 3 years ago. I have known people that have had this disease for years and still live normal lives. If I was at home on disability, I feel like I would have nothing left. Our family needs the money, and I need something to make me feel proud of. I love my job. I have the ability to work from home when I need to, but I love going in to work. People that come in daily don't know that I have anything wrong. I like that feeling. I feel that I am disappointing my kids, husband, parents, etc. I have always been a strong willed person and stubborn at times. I have gone through a lot of heartache and it has made me the strong person, that I have always been. I feel like I am losing that person and it scares me.<br /><br />I sometimes think that using a wheelchair at times would give me some of my life back but at the same time, I feel like I would be letting my family down. The worst part of this disease is that nobody can see the pain. Since being diagnosed with MS, I have also been diagnosed with Chron's and Fibromyalgia. These are common with MS. But for me, it just doesn't seem fair. I am angry and sad and scared as to what is coming next and where this is going. Usually, I keep a smile on my face and most people don't see the pain and anger inside of me. I think people, get frustrated because I don't do all the same things and am uncapable of doing what I have always done. So, again, I disappoint them. I feel like they have no problems telling me how I disappoint them, but I don't ever say anything back. I just take it in and then, I end up where I am now. A place, where I feel that I am nothing but a disappointment to everyone but also to myself.<br /><br />Everyone goes on with life and all there "problems" and I try to understand and be there to help where I can and to listen. But when it comes to me, if I say anything about what is going on with me, then instantly, it is "Tara, stop it" or "Tara, you need to just exercise more", Or "Tara, you should go see a shrink"... What is it not ok for me to be upset or angry or even sad at times??? I just wonder how these people would act if it was them in this situation??<br /><br />I know, I probably shouldn't be writing this, but maybe it will help someone else that feels the same way, to know that they are not alone. Also, it helps me to get it off my chest, because it is apparent that I can't tell people how I feel. People instantly try to fix you... Or fix the problem... Hey eveyrone, You can't fix a problem like this. You can't fix me. It is what it is.. I don't like it, actually I hate it. But until you are in my position or someone else with the same situations. You will never truly understand what goes on in our bodies or our minds.<br /><br />I am going to post this without rereading, because, I will just delete it... Sorry for spelling mistakes.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com7tag:blogger.com,1999:blog-590366782977140198.post-51860009681217067272010-02-28T18:40:00.001-06:002010-02-28T18:42:48.156-06:00Life, It IsWhat It Is!!<a href="http://www.usask.ca/wcvm/herdmed/specialstock/antlers/yingyang.gif"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 330px; height: 330px;" src="http://www.usask.ca/wcvm/herdmed/specialstock/antlers/yingyang.gif" border="0" alt="" /></a><br /><br />Wow, it has been a very long time since I have written in my blog. As I look back at my last post I think of all the things that have happened since then. It's kind of ironic, that what was bad then, seems like nothing now. I really had high hopes that 2010 was going to be a way better year then 2009. It is funny to think that every new year, I seem to think the same way, and then for some reason or another, it doesn't go my way. I am sitting here wondering if it is the same for everyone, or just my dumb luck.<br /><br />I will rewind a bit and explain what all has gone on in the last 8 weeks. My last exacerbation started in October of 2009. I held out til November before giving in and having the I.V. steroid treatment. We all know how much I hate them. Anyways, in the very beginning of January I had to do another course of steroids. This time I chose to try the oral just because I didn't want to go through all the side effects. It seemed to have worked. I am not falling nor is my vision blurry. So, even though it did take two courses of treatment, it did get me back on track. The only symptoms I have really been fighting is the fatigue and muscle spasms. About the same time I was going through this, my son who is 14, started complaining of severe head pain and dizziness. We had taken him to the doctor's and was told to wait it out for awhile, to see if it improved. Three weeks later we ended up in the Emergency room, where they treated him with a cocktail of drugs and determined that it had been a migraine. He was fine that night with the dizziness returning the next day. We were sent to a Neurologist who ruled out any brain issues. He was not allowed to continue Wrestling though. Later we went back to the Doctor's to find that the dizziness has something to do with his pulse and blood pressure. Apparently, the more vertical he is, the heart is not able to push the blood to the brain as fast and this is causing his dizziness. We go see the Cardiologist this Wednesday. Also in January, My husband's Grandfather "Papa" passed away. Papa lived about 10 minutes away and was a huge part of our family's lives. It was and still is very difficult.<br /><br />So, in a nutshell, this year has not started out the way I had hoped for, but I am still holding out hope for some good to come this year. <br /><br />On a positive note. My Doctor's, who do not work together as a team but individually, did make some changes to my meds and they do seem to be helping. Apparently when you have MS, then your Neurologist handles all issues. When you have Chron's then your Gastro handles all those issues. When you have Fibromyalgia, then your regular Doctor handles those issues. Kind of odd, since they are all Autoimmune diseases. So, I was able to get some help by adding a medication for the severe spasms, caused by the MS. As for the Fibro, I was able to get rid of 2 medications and add 1, and that seems to be working very well for me. And then with the Chron's, it did take 2 doctors but they have that going good for me now too. It does cause a lot of frustration when Doctor's don't work as a team.<br /><br />I figured that I would take the time to update everyone on why I haven't posted in a while. I have a lot to write about, but for now, I will focus on the current situation(s). And then I will write about some actual informative topics that I have learned about in regards to Multiple Sclerosis and Living Day to Day with MS. You know, I guess that in some odd way this current blog does sort of sum up "Living Day to Day with MS".<br /><a href="http://3.bp.blogspot.com/_Pb9x0V3mu_M/S4sLmTd8GlI/AAAAAAAAAiU/H6mrucRGLDU/s1600-h/post_282396_1211248135_med.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 131px;" src="http://3.bp.blogspot.com/_Pb9x0V3mu_M/S4sLmTd8GlI/AAAAAAAAAiU/H6mrucRGLDU/s320/post_282396_1211248135_med.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5443457327296158290" /></a>Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com3tag:blogger.com,1999:blog-590366782977140198.post-57840790636075183702010-01-21T13:57:00.012-06:002010-01-21T17:27:02.510-06:00Living with MS Means Living with Daily Symptoms and PainsLiving with Multiple Sclerosis Means Living with Daily Symptoms and Pains. It is not something we like to know and it is hard to accept at times. I have been dealing with symptoms and pains for a few years now. Some come and go as they please and some are with me everyday. The past few months have been really rough with balance and dizziness symptoms, fatigue, and the pains in my legs have become worse. I find it interesting and frustrating at the same time to know that when I called the Doctor regarding the pains in my legs. I was told that <strong>I should go to see a psychologist to get help accepting my MS.</strong><br /><br />Now some of you have gotten to know me very well over the last few years and some of you are new to learning about me. It blows my mind that someone (my Doctor) of all people would think that I haven't accepted my disease. I consider myself very accepting of the disease and the daily pains and symptoms that go with it. However, sometimes the pains are very bad and continue to stay bad or get worse and I thought maybe, by calling the Doctor, they would have some ideas to help with the symptoms. My Doctor said " you have MS you will always have symptoms and pains and it will progressivly get worse, that is MS". <br /><br />I get frustrated because I take a lot of pride in accepting this disease and try to help others accept it. This same Doctor (not my Neuro, it is my G.P.) knows me well enough to know that I don't call her nor do I go visit her unless she demands it (1 time a year). So if I am at my end and am asking for help, you would think she would keep that into consideration. I want to ignore her request to go see a psychologist because acceptance is not an issue I have. <br /><br />For the last few weeks my legs have hurt so bad. I sent a message asking if there was anything I could be doing because, by the time I wrote her I was in so much pain. Oh yeah, I may have mentioned that I was ready to amputate both of them to help reduce the pain. Now I know that amputation is not the answer because I would not be able to wear the cute jeans I just bought at the store but I wanted her to know how bad it was getting. <br /><br />Its crazy to me how many Doctors you end up having when you are diagnosed. Then they push you to Specialized Doctors when a part of the body is getting messed up. You go to see the different Doctors, have the test run and then none of them talk to each other. So I feel like I get pushed off on to different doctors but the results dont get relayed. So you are basically having to start from scratch and explain what each Doctor tested for and what they feel should be done. Only to have the initial Doctor disagree and say NO. Isn't that why they send you to Specialists??? <br /><br />So I am going to sum up really quick where I stand.. When I am forced to go see the Doctor and I finally come to see them. When they ask me, "How is everything going"? I am going to say "Fine". This way I dont get shoved off on to other Doctors and waste my time. I won't be told, "deal with it...you have MS". I won't be put onto medications that may or may not be helping. If they are helping, are they only helping contradict the side effects from the other medications? I will start looking into natural products to help with the symptoms and just try to do the best I can each day.<br /><br />Oh, and I have been asked by many of you how the MRI went. I only had the MRI of the brain done. There have been no changes so I am very happy with that. It does leave me questioning how it is possible to have no changes on the Brain MRI but my symptoms seem to be worsening??? HHhhmmm It is a mystery to me.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com14tag:blogger.com,1999:blog-590366782977140198.post-27378324371899194532010-01-10T14:32:00.006-06:002010-01-10T15:12:39.885-06:00An Exacerbation that Lasts Forever.It has dawned on me that it has been over 2 months since I have posted on here. I am laying in bed wondering where the last two months have gone. Granted, there were the Holidays but oddly I feel like it was yesterday when I posted on here. It is times like this that I realize that I have let the MS control me. It gets me so frustrated when life just passes by and you feel as though you are in the moment but when you look back you realize you were in bed and doing everything to fight this disease. I call it "Fight to Survive" mode.<br /><br />I swore a year ago that I was going to try to fight and ride out my MS attacks. I was not going to rely on the Solumedrol to help me. Let me clarify quickly. Solumedrol is great and a huge help in trying to suppress an MS exacerbation. For me, I have horrible side effects and those side effects seem worse to me then fighting the MS exacerbation. When an exacerbation effects my vision, then and only then is when I have an inside battle on what to do. So, in November, my vision was very blurry and I was falling and very unbalanced but it was always happening on the right side. Every time I would fall it was to the right. When my vision went blurry and I was falling, I made the decision to finally take the steroids. My Neuro knows how hard they are on me so we decided that instead of doing 1000mg I.V. daily for 5 days we did 500mg a day hoping it would help put the MS exacerbation in remission and also maybe not have the side effects. <br /><br />Well, the attack seemed to have been stopped so that was good however, the side effects were just as bad. And then starting in December, I started having horrible headaches and by the end of December I was very dizzy and constantly motion sick. I have had vertigo before in the past. The room would spin horizontally and I also have had it where the room would spin vertically. This time, there was no spinning. If I would move my head even the slightest... I would get so horribly motion sick. I finally went in to the Neuro this last week. Of course he responded with the fact that he would normally insist on Steroids again but since it has only been about 2 months he recommended oral steroids. He also wants an MRI done to see what is going on. He is trying to determine if this is one long exacerbation since last November or if another exacerbation is happening again. He said that either way, both have been affecting my equilibrium. By doing the MRI it will show if the MS is getting worse or not. <br /><br />I have to say that I hate going in for the MRI's because you are going to have a 50/50 chance that it is the same or progressing. Who wants to hear that the MS is progressing? I know I don't!! Mabey that is denial or mabey it is just not wanting to hear the answer that we are all expecting to hear. Either way, I am very nervous.<br /><br />I know I have said in the past that I think when someone is diagnosed with a disease, you go through a "grieving" process. That process eventually goes away but everytime you start to show problems again, the "grieving" process pops back again. And this is where I am at the moment. <br /><br />I want this exacerbation to end and get on with my life. Get back to enjoying everyday and not losing months of my life at a time.<br /><br /><br /><strong>Just A Reminder</strong>: Having MS means having many medications in your home. I have 3 kids. 2 teenagers and one is 10. As I was looking around in my drawers, I have gained many medications over the last 2 months let alone over the last few years. Now, I trust my kids but they all have friends that know I have MS and so I thought it was a perfect time to remind everyone to find a place to lock up all your medications. By keeping them safe you are also helping to keep many kids safe.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com6tag:blogger.com,1999:blog-590366782977140198.post-66835999358940766772009-12-02T18:25:00.003-06:002009-12-02T18:32:57.776-06:00Helping Fellow MS'ersA few months ago I called the MS Society to find out how I go about opening a non for profit account for donations if I was to do a fundraiser for Multiple Sclerosis. They willingly said they would open an account and that it would be donated at their discretion to research. I explained that this is not where I wanted the money to go. <br /><br />When I was going through the process of being diagnosed it took about 7 months and another 2 years before I was under more control where I could work part time. It started in August of 2006. I was quickly not able to work. This took our family from a two income down to a 1 income family along with all the medications and Doctor visits and co-pays. This put a major strain on our family and quickly affected our abilities to pay bills along with food and my medications. Christmas holidays approached us very quickly and we were having enough financial trouble let alone trying to give my kids a "good" Christmas. We were already having to borrow money from our parents to help pay our bills. Most people do not go through life prepared for the day that something like this happens and when it does, it is a huge devestation on yourself along with your family. Not olny that but it is a disease that is life long and progressivly gets worse. You are not given a timeline as to how quickly or slowly it will progress and what your needs will be. <br /><br />That first Christmas I recieved a phone call from my Boss that said not to worry about Christmas and that the Company I worked for was taking care of my kids Christmas presents and also raised some money to help pay a few bills. I was so emotional about that. I was so greatful but also embarressed that people were doing this for me. Some that I knew very well and a lot were strangers that just knew our story along with friends and family. A few days before Christmas the tree was filled with presents for my kids. Nicely wrapped and labeled. Between my Family and Friends and work almost all my bills were paid that month along with help given to our family throughout the years by my family and friends. It gave me a new outlook, as we all know about Santa. That year I realized that Santa doesn't have to be a big jolly guy in a red suit. <br /><br />I will never be able to repay every person that has helped our family over the years nor do I believe they expect me to. All I know is that whenever I can and in whatever way I can, I have wanted to be able to help other people with MS and their families any way I can. <br /><br />When I called the MS Society and asked abut the account, I explained that there is enough money going into research and that my goal was to raise money and take item donations, to help people and families affected with MS and help them. I was told that if I wanted them to open a non for profit account. The Society's way is the money would be used the way they wanted to use it (Mostly for Research). I was so frustrated and discouraged but have never given up on the idea. When you are diagnosed with any desease, in most cases those families will have to face very hard decisions. Decisions such as buying medicines or food for their family, bills or shoes to put on their childs feet, etc... My hope for the future is to find a way to make this dream of mine a possibility and to help families in their times of need because of Multiple Sclerosis and hopefully in time they will try to pay it forward when they can. I will never have enough money that I can give out due to the fact that we still struggle, but there are times that I can buy some extra food or put some money away or even buy some extra clothes off the clearance rack and donate to other families. Or even if there is someone that needs help paying a bill or medications, maybe there would be enough money in the fund to help with that. <br /><br />I am still looking for the answer as to how to go about doing this as I know there are a few other people that I have talked to recently that also have MS and are trying to find ways to help others in need of assistance. I just need some direction on how to go about starting this and setting up an account. I have been given a location to store donated items and to have a drop off location. I just need to figure out how to set up the account and then to get the word spread. Some how some way, I will figure out a way to make this happen. We all deserve to have help when it is so desperately needed.Living Day to Day with Multiple Sclerosishttp://www.blogger.com/profile/16919357938675061411noreply@blogger.com6