tag:blogger.com,1999:blog-38858029793032043112024-03-14T01:21:40.046-04:00Growing up with M.S.My life and times shared with a monster....Multiple SclerosisAnonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.comBlogger96125tag:blogger.com,1999:blog-3885802979303204311.post-57526082635081719462017-06-15T15:25:00.003-04:002017-06-15T15:25:36.159-04:00It's been a long time since I've felt like writing. I guess to clarify I always write I just haven't wanted to publish anything for a long time. What's changed? I don't really know. So much is going on in my life right now that I guess I feel like reaching out in the hopes in not just me going through these feelings and changes.<br />
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I feel a bit lost these days. I'm not sure exactly why, and maybe lost is not the right word. Restless, lonely, even irrelevant would be better descriptors. <br />
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I should back up a bit I suppose and give some background of what has been going on in my life since I last published a post. My oldest daughter is now beginning her third year as a pre-med, neuroscience major and lives about 3 hours away. My youngest daughter is starting her senior year of high school with on foot out the door already. They are both very busy young women with big plans for their futures, and I couldn't be more proud of them. I survived my husband's six month deployment overseas. Now its surviving his being home again. <br />
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Lately I've been feeling a little left behind. It feels as if everyone in my life is moving on to bigger and better things except me. I can listen to their adventures and accomplishments, but I have none of my own to share with them. Since Keith came home I'm still feeling like I'm waiting for something instead of making something happen. He's been able to get right back into the swing of life pretty seamlessly with plenty of friends to keep him happy and occupied. I wonder why does he need me? I don't have anything to offer. My anxiety has kept me from being the person I used to be and want to be. I don't have friends, I don't go anywhere, I don't have anything to add in intelligent conversation. I have become the type of woman I detest. The one who lives through her children. How the hell did this happen to me and what do I do to change it?<br />
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I suppose this is just the next phase of my life that I need to conquer. I don't know how though.Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com1tag:blogger.com,1999:blog-3885802979303204311.post-88203646294819364972015-09-24T09:23:00.002-04:002015-09-24T09:23:49.316-04:00The Last Few MonthsSeems I'm back after a long few months. Life just didn't allow me the time or clarity to post anything recently. I have to be honest I'm still not experiencing the clarity of mind that I would want, but such as life with Mutliple Sclerosis.<br />
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Here are a few updates:<br />
I moved my daughter down to college in August. She is 4 hours away and it feels like she is a whole continent away. She is my hero. She has taken this new challenge on and is thriving through all the stressful, sleepless nights of studying. She has her eyes on Johns Hopkins for med school. Did I ever mention she is a Neuroscience major? Most people think she chose that line of study because she grew up with me and M.S., that may be partially true, but she also has an insatiable need to know how our bodies work. <br />
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The fifteen year old has switched her focus from all dance to theater. She is determined to be on stage in New York someday, This girl has a talent for everything creative. Writing is becoming a passion for her and let me tell you she is good. She wrote a fictional story about an abusive mother who turns out to be a serial killer. At one point the teacher actually wrote on her paper "oh dear, I hope this is fiction?" Well duh. I told her if your creative writing teacher doesn't question your home life then your not doing it right.<br />
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My parents are in the middle of a move to a new home that has been a total cluster fuck from the get go. They decided to downsize due to my Dad's health. They had quite a bit of land and a larger house. It breaks my heart because this was my Dad's dream home when they moved in 15 years ago. He worked so hard his whole life and accomplished things most of his family couldn't. He never graduated high school, but worked his ass off, holding sometimes two and three jobs. When he had to stop working due to Rheumatoid Arthritis and IPF (hardening of the lungs) he was lost. This house became his sanctuary. Thanks to my Ma and her skill with plantings the property looked like a park. I took him aside and said, "I know this is not ideal or where you thought you would be at this stage of your life, but I'm here and will help make the new house a home for you". I have only seen my dad cry a few times. He didn't cry then, but his eyes teared up and that kind of broke something in me.<br />
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I'm still taking my Tecfidera twice a day. I'm still itching like a dog with fleas from it, but at least I don't to poke myself with needles anymore. I feel like my eyes are a bit jacked up from from this stuff, but I haven't made a doctors appointment. I will soon.<br />
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So there you have it. My recent life in a blog post. So exciting right?<br />
<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-19545673300540149232015-06-04T09:40:00.000-04:002015-06-04T09:40:02.110-04:00I run....I haven't written about running lately. I've been doing it, but just not very good in my opinion. I get so frustrated with myself. I feel like I'm going backwards instead of progressing. My pace is a slow 12-12:30/mile lately. It used to be in the 10s and 11s. I work so hard for every stinking mile I do. My energy levels have plummeted to a new low lately and just keeping up with my daily life is hard, let alone trying to run.<br />
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I keep telling myself not to complain, that I'm lucky to be able to run. <br />
Then I get pissed! Why should I feel lucky I can run? Why should I feel grateful to do something others can do without even thinking about it. <br />
Then I feel guilty because I know that not everyone who is afflicted with Multiple Sclerosis can walk let a lone run. <br />
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<br />
Yikes! Who knew a three mile run could involve so much drama? In the end I am grateful I can still get about on my own for now. When I run my slow three miles I'm doing it for all the times I wasn't able to run.<br />
I run for the days when I won't be able to in the future.<br />
I run for therapy. <br />
I run for focus.<br />
I run to hide from M.S. even for a little while.<br />
I run to feel strong even though I'm not.<br />
I run for everyone who can't walk let along run.<br />
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I run because I love being in park navigating the trails. I hear the birds in the summer and feel the snowflakes on my eyelashes in the winter. It is my heaven and haven. <br />
In the end I am grateful I can still run.<br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com2tag:blogger.com,1999:blog-3885802979303204311.post-12312820842160419032015-05-28T09:50:00.000-04:002015-05-28T09:52:51.939-04:00ParentingI am taking my 17 year old daughter and niece to a Lana del Rey concert on Sunday. I love live music and was so excited about this six months ago when I bought the tickets. Now? I have been obsessing over every aspect of going.<br />
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The drive is about 2 hrs.<br />
It's outside and we have general admission lawn seating.<br />
Is it going to rain?<br />
Will the hill be muddy?<br />
The concert is sold out.<br />
What should I wear? I don't want to look like a mom trying not to look like a mom.<br />
I don't know where the bathrooms are. <br />
Am I going to be able to stand for all those hours?<br />
I have to drive home in the dark!<br />
Blah blah blah and so on....... <br />
<br />
I'm truly nearing panic critical mass here. This all goes with my M.S. experience. I tend to shy away from crowds and unfamiliar places. The concert venue is is not unfamiliar to me. I have attended concerts there in the past. It's actually one of my favorite venues. I have always gone with my husband though. Never by myself.<br />
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What was I thinking? I was thinking this would be a great graduation present for my daughter. I have never wanted my kids to see me shying away from things because of my M.S. I want to be a strong role model. I think I have.<br />
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Parenting with M.S. has been full of challenges for sure! It has affected every aspect of our lives since the day the girls were born. The thing is kids are resilient, and this has been their "normal" their whole lives. The have seen me at my lowest, being hospitalized, with tubes in my arms, not being able to walk, and being completely broken down. But they have also seen me over come all those things and keep going.<br />
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So I will suck it up, put on my flower headband, and hope a friendly cloud of smoke wafts my way to calm my nerves.Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-26571533114178375552015-05-19T13:29:00.003-04:002015-05-20T12:56:56.054-04:00My Mom coffessionI have been a bit obbsessed with the fact that my oldest daughter is graduating high school soon. Too soon. I am astounded about how quickly these school years have flown by. I worry that I may not have been involved enough in her schools. I worry that I haven't told her enough about boys. I worry that I haven't taught her how to make rice. Yes rice. It's cheap and you can do a ton of things to liven it up. Anyhow I worry.<br />
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Here's the biggest thing I worry about though. My dirty little secret. My unspoken shame. I worry that I am losing my best friend. "Whaaattt?!" you exclaim "She is your daughter she can't be your best friend." Not true. She can be<b><i> my</i></b> best friend, but I just can't be hers. And I'm not, I know that.<br />
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The reasons I consider her my best friend should be pretty obvious. We spend loads of time together. We critique each others outfits. Share makeup tips. We even go halfsies on shoes and makeup. She does wear them more than I do though. We have similar taste in music and are always like "have you heard the new Yelawolf?" " I can't wait for the Lana Del Rey concert". I know all the school gossip. We talk about her future. We cry together and laugh together. I have tons of fun with her. I love spending time with her. So yeah she's my best friend.<br />
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Now I'm not naive enough to think she tells me everything. I know she has things she shares with her friends that are all her own. I also know I get on her nerves. When I say "no staying all night at the cast party I want you home at 1:00" or "I need an address of where you're gonna be tonight". I always get a little attitude about that stuff. That's fine by me because in the end she is always home at 1:00 and I always have an address. That attitude also reminds me that while I may think of her as my best friend she will always see me as Mom first.<br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-49010083890567333792015-05-08T11:33:00.000-04:002015-05-08T14:47:05.967-04:00A special happy birthdayI need to say Happy Birthday to my friend Tracy.<br />
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She and I met in 7th grade in health class. We were taking a test and she whispered to me "hey can you move your arm I can't see your paper". I was like "what?!" Then she smiled and we got in trouble for laughing during the test. We were attached at the hip from that point on.<br />
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I spent so much time at her house that her dad thought he had a new daughter. We went so much together at a very young age. We smoke, drank, cut school, and were just plain old hooligans with a fist fight or two tossed in the mix. With arrogance that comes with youth we thought we were invincible. The situations we found ourselves in make me cringe now as a parent, but back then we thrived on the adrenalin that flowed through our veins with each experience.<br />
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We defended each other even when we knew we wrong. We could call each other bitch, or whore, but if anyone else did, well, be prepared for a beat down. We held each other up after the suicide of a good friend of ours. We cried for each other when our hearts were broken by some douch-canoe of a stupid boy. We were sisters.<br />
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She was very sexually active early on. I was not. She was the one who always told me to wait. Her story is not mine to tell, but suffice to say she ended up pregnant at the age of 15. I was there through it all even during the conversations her father had with her about putting the baby up for adoption. Her mother left the scene when Tracy was only 2yrs old. Heavy stuff for a young girl right?<br />
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Those early teen years with Tracy and her dad and brother helped shape me in ways that I'm forever grateful for. I learned so much about friendship, and sisterhood.<br />
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As high school went on we started to lose touch since Tracy was staying home taking care of her baby and eventually got pregnant again at 17. Our lives went separate ways for years until we met up again in the grocery store one day. By that time I was pregnant with my second daughter and Tracy had just had her fourth.<br />
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We kept in touch, went to birhday parties for each others kids and just chatted a lot.<br />
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Tracy was diagnosed with Lupus some years back and things started to fall apart for her. Her health steadily declined.<br />
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She would have been 44 today. She passed away almost two years ago leaving behind one son, three daughters and several grandbabies with another due any day now.<br />
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Happy Heavenly birthday Tracy. You were my best friend, and sister during a very special time in my life. I will always love you.Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-84756414444128945772015-05-05T12:02:00.001-04:002015-05-05T12:02:28.038-04:00WordsChoices made, Hell to pay. I'm not gonna apologize for making it.<br />
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I covered all my scars with layers of denial and tears a long time ago. They're still there, but you'll never see them because you can't open your eyes wide enough to see beyond you. Worked for what I have. I haven't lived the life I dreamt of. Haven't come close. But I do what I can.<br />
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I'll never be the hero of a story. My stories are not for you. Easily forgotten, easily lost. One time I forgot myself, let someone get in my head. Poked around stirred up hope and dreams then they were gone. I think it was a dream because it was dark outside. Mourning came and it was all gone.<br />
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Choices made, Hell to pay.<br />
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Always afraid to try. Always hurt. Never trusting. Those lyrics are tattooed in my mind, if you look close enough you can see the echoes in my eyes. But you'll never get close enough, I won't let you.<br />
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Afraid to live. Afraid to die. Afraid to be dismissed and pushed aside. That's only part of me.<br />
Longing to belong and know my worth is all of me.Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-65740947773780477852015-04-29T09:02:00.001-04:002015-04-29T09:02:33.139-04:00Where did the time go?I'm sitting here looking at graduation party ideas for the Swimmer Girl. My oldest. I just can not believe she will be done with high school in a little over a month. Where did the time go? I know every parent asks that question, but until now I never understood the significance of those simple words.<br />
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I still remember dropping her off at preschool like it was yesterday. I was a mess, and if I'm going to be completely honest I kind of wanted her to more of a mess. She took her teacher's hand and never looked back. I on the other hand crept all stalker-like around the building to the window and just watched her with tears forming in my eyes. She was fine. I was not. I bawled into the steering wheel once I got to my van. It took all my willpower to not rush back into the school grab her up into my arms and run for the hills.<br />
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I know I asked "where did the time go?" that day. The thing is I brought her home 4 hrs later. When she leaves home for college this August she won't be back home any time soon. I won't be seeing her everyday after school like I do now.<br />
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I know parents always say things like "I can't wait for her to be out my house". I don't. I caution parents with young kids to be careful what you wish for because some day sooner that you'll believe you'll be asking "where did the time go?", with tears in your eyes just like me.<br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com1tag:blogger.com,1999:blog-3885802979303204311.post-56599474968511382982015-02-24T15:45:00.001-05:002015-02-24T15:45:39.075-05:00SSDI Regrets part 2<div class="separator" style="clear: both; text-align: center;">
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I want to clarify a few things from my previous post. First things first<br />
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<b><i>I'm the realist,( realist)</i></b></div>
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sorry for the Iggy Azalea line, but it always pops out when I say that. Anyhow first off I want to say my husband is really not as jerky as I make him sound sometimes. He just asks the hard questions that I don't like to ask myself. He really does have my best interest in mind. Secondly, no I am not writing this because he was angry about my last post. He doesn't even read my blog even though I try to get him to but end up sounding like Barney Stinson from How I Met Your Mother.<br />
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<i><b>"you should read my blog it's getting better"</b></i></div>
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The truth is he's right to an extent. Before I was receiving benefits, if I had to push through days at work I did. I was more open to new experiences. To be fair, those usually came as a result of my work. I attended wine tastings with sales reps, I would have to make trips, host weekly wine and beer tastings for my customers. I was always meeting new people. Did you know winemakers are complete lunatics and a total blast? Well they are and I had a lot of fun learning that little gem in my old job. <br />
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Now that I am not working and have a steady if small, income from social security, I am much more sheltered. I rarely go out. I don't really meet new people. Due to the progression of my M.S. I don't have the energy to do those things anymore. In reality I didn't have the energy to do those things then, but that was part of my job and my income. That is the pisser for me! I miss my old life terribley, but I can recognize now that maybe I am looking back on it with more romaticcaly than it was.<br />
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Social security has made it easier for me to rest when I need to without worrying about calling of work. I don't feel like I am putting a strain on not only my family, but also my co-workers when I have a long relapse. Towards the end of my career I was starting to feel very undependable.<br />
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There are times when I feel undependable. I don't make commitments to people too far in advance because I don't want to cancel. I haven't taken up volunteering for things at school for the same reason. You know the parent booster mafia, I mean moms, don't play that shit. <br />
In Michael Corleone voice <br />
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<i><b>"Mrs. Smith made cookies. So did Mrs. Sobecki. Mrs. Jurski. Mrs. Mosiniak. Mrs.James. All made cookies. Today I took care of all booster business so don't insult my intelligence and tell me you were too exhausted to make cookies. This is what I'm gonna do since we're all family here I'm gonna put you in the visitors side concessions booth.</b></i> </div>
Get there and never heard from again. Just sayin' <br />
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I just want to stay under their radar. I still feel bad sometimes that I am not working outside the home and bringing in a bigger wage. However, as I pointed out to Keith, if I called off work I was not getting paid for it. When I lost a job because I wasn't "performing to the acceptable level" due to relapses I wasn't getting paid either.<br />
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It is a trade off. Do I think it's worth it? Sometimes. When I'm not looking through my Rose` colored glasses, and beer goggles. Honestly I know it was the right thing to do for my health.<br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-9699538963958447472015-02-23T08:35:00.003-05:002015-02-23T08:35:55.274-05:00SSDI regrets?While driving in the car yesterday, Keith and I were discussing why I don't do some things anymore. I really thought we were past this. I asked him to go to the store with
me, and he got really angry. I was nervous because I wasn't feeling
well. He snapped. and this is when all this started.<br />
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Keith asked me if I think I gave in too early when I decided to take Social Security Disability four years ago. I was taken aback as he tried to explain his comment. He asked if I thought maybe I would try harder to do things and be happier if I hadn't filed for SSDI That I always have an excuse now not to try new things like a part time job that would make more money than I get now. He thinks I would take more chances and "push through" the times I don't feel well.<br /><br />
I was stunned to say the least. I tried really hard not to cry (I failed), but I was hurt and super PISSED. Was he serious? Did I need to<br />
get the therapist transcripts? Of course I think I gave in too early even though I had been fighting this disease for 20+ years before filing. He was on a 12 week deployment at the time, I had no support from family, friends had their own lives and I was alone with two daughters trying to make things as normal as I could when I couldn't walk. My Neurologist was worried because I was relapsing, but not remitting. My MRI was showing new lesions and active old ones. I was a mess physically and mentally. It was time to focus on my health, not my job.<br />
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In answer to my husbands question, yes I do feel like I gave in. I loved my job. I loved all the jobs I had to leave due to this disease. I let Multiple Sclerosis win and take that from me. There are still many days I feel like a huge failure because I can't control this. If I could keep a job and make more money I would be thrilled. <br />
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The fact is that is not my reality anymore. I try to be OK with that, but when someone I trust and respect starts to question my choice I become a lot less OK with it. I have to remind myself these past four years I have been able to attend swim meets and dance competitions with my daughters because I didn't have to choose using all my energy at work over cheering my daughters on. I have been able to take care of my physical health by exercising when I am able as opposed to flopping the couch zombified after a stressful day at work. I have to ability to just take it easy when I need to and be a better wife and mom.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjnBYc-uTbYq4e2L6P0ps1ufglW53ytAc1ZXRkrv15cX2LrdEuqf2iCWNPA_1tvrDLj0sXWV_X3qpeFUSnxd_qL9N2Qj-OzFXowQxK8nyUbK_MDOgyvhU8P7EkpvUXWQzwa4EDud0bUeDR/s1600/best+i+can.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjnBYc-uTbYq4e2L6P0ps1ufglW53ytAc1ZXRkrv15cX2LrdEuqf2iCWNPA_1tvrDLj0sXWV_X3qpeFUSnxd_qL9N2Qj-OzFXowQxK8nyUbK_MDOgyvhU8P7EkpvUXWQzwa4EDud0bUeDR/s1600/best+i+can.jpg" height="198" width="200" /></a>I will always have regrets, but this is something I have to live with. I just hope the man I choose 27 years ago to share my life with can too.<br />
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Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com3tag:blogger.com,1999:blog-3885802979303204311.post-4647340174883299642015-01-28T09:18:00.000-05:002015-01-28T09:24:33.985-05:00And the winner is.....Finally got to my neurologist appointment. Brought the hubby with me so he can listen to my options for new oral medications. I also wanted to discuss my current symptoms with the Dr. and have Keith hear the neurologist's assessments. I think it's a good for him to hear from a "professional" every so often so he can be reminded this disease is always working on my body and changing whether he can see the physical effects or not. My fatigue is not something a good nights sleep or and hour nap can fix.<br />
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Once we were done with the regular assessment portion of the appointment the Dr./inquisitor peering over steepled fingers with a slight smirk(yeah I caught that)asked the million dollar question,<br />
"So, are you still taking the Rebif injections"<br />
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I looked him straight in the eye, plastered a huge smile on my face, slapped my hand on the desk and said,<br />
"No. That's why I'm here"<br />
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I have never seen him laugh out loud in all the 10 years I have been seeing him, but he let loose at that. I know he was testing me because I had spoken with his nurse previously and confessed my injection indiscretions. I told him I feel like a baby that I can't bring myself to inject Rebif anymore, but that is just how it is for me now. He was very kind (like always really) and went right into explaining my options for oral medications. I had already done some research on the subject and was prepared with and initial choice, but I wanted to hear from him as to what he would recommend. We discussed all three.<br />
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<br />
<b>Gilenya</b> <b><a href="http://www.gilenya.com/index.jsp" target="_blank">http://www.gilenya.com/index.jsp</a></b><br />
<br />
<b>Aubagio <a href="https://www.aubagio.com/" target="_blank">https://www.aubagio.com/</a></b><br />
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<b>Tecfidera <a href="http://www.tecfidera.com/" target="_blank">http://www.tecfidera.com/</a></b><br />
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We came to the conclusion that Tecfidera would be the best option for me. Tecfidera was my initial choice and I was pretty thrilled that was the medication he was most leaning towards for me. I am not going to go into the specifics of each of the drugs. You can look those up for yourself with the included links. This a personal decision for everyone and one that should be made with your neurologist.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6O085NeovwLyV7F-KVshZ187N1uEKDbcOjZtihdZzr_Af2qdRfyC0WAPX4MxlK-zbDfuUYB8t_r13IZFvhDRpCcoaKaB8j3G_5g6FSDiij90_Bs8-3WPjNNGtwIC1c3_buhPaVH9cU9q-/s1600/mri.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6O085NeovwLyV7F-KVshZ187N1uEKDbcOjZtihdZzr_Af2qdRfyC0WAPX4MxlK-zbDfuUYB8t_r13IZFvhDRpCcoaKaB8j3G_5g6FSDiij90_Bs8-3WPjNNGtwIC1c3_buhPaVH9cU9q-/s1600/mri.jpg" /></a>I had the initial blood work done and will be have an MRI in the next few days. I am currently experiencing a flare- Boo Hiss- and will be having a round of IV steroids - double BOO HISS-so once I get over this bump in the road, I'll be able to get on with the new medication.<br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-87083469785462239972015-01-14T10:01:00.001-05:002015-01-14T10:01:10.319-05:00How are you feeling?How do you respond when someone asks "how are you feeling?". Are you honest if you're not feeling all that great? Do you fudge the truth to steer the conversation in another direction? My answer depends on who's asking. If it's family or a close friend I tend to be a little more honest. If it is an aquaintence who knows I have multiple sclerosis, but I don't know very well I'll fudge it with "I'm good and you".<br />
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The sticky part comes when I am honest and the reply always seems to be "well, it's just the weather, everyone is feeling like that", or "well you seem like you're walking alright". It is so frustrating because I know they are well meaning and trying to be supportive, but in the end I feel like my symptoms are being diminished. I mean jeesh you asked so please don't make excuses for me or try to reinterpret my symptoms.<br />
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Oh and if I get asked one more time when I start my new medication, I think I'll smack someone with my cane. I understand sometimes people believe that medication is a magic pill that will never make me have another relapse again, but if that were true that would be a cure right? Our multiple sclerosis medications control the disease to an extent. If I stop taking my medication that does not mean I will have a relapse the next week. The reverse is sometimes true. I can take my medication religiously as prescribed, but still have several relapses during the year. <br />
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While we are on the subject of relapses, a relapse for me is not just the inability to walk properly. An exacerbation can affect my sight, my left arm, my speech, my cognitive thinking, or be extreme fatigue. It is not cut and dry and even after 24 years this disease is always changing for me. <br />
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Do find these things true for your situation? How do you handle them? For me the best place to be completely honest is right here. Lucky you!<br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-55056220858476916092015-01-07T12:35:00.002-05:002015-01-07T12:44:17.376-05:00Apppointment or ConfessionalMy upcoming Neurologist appointment has been really weighing on my mind. First off, I have to go in and confess that I have stopped taking my Rebif injections. <br />
That makes me nervous, just like going to confession at church. If you're Catholic you can relate and remember sitting in the confessional pouring out the great sins of your week, "I called my little brother a jerk, I though my mom was the B word when she didn't let me go Leeca's house, I yelled at Leeca and threw my roller skates at her and walked home in my socks" You laugh, but that was big time sin back in the day. <br />
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These days I sit nervously in the exam room, and when the doctor comes in I hem and haw about how I'm actually doing then all of a sudden just blurt out "I'm sorry I haven' been taking my shots". I don't want to be judged or looked at as "bad", but aren't I if I don't take my medication properly, or call my little brother a jerk. The priest, I mean doctor just sits there stone faced and when you're done doles out my penance and feeds my guilt. I always feel like I have let my neurologist down somehow by misbehaving and not taking my injections as prescribed. <br />
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Depression, as I have written about in the past, is something I deal with everyday. I believe the Rebif truly was making it worse. I feel better mentally since I have stopped the injections. Physically, I would say I feel the same, but not being able to see my lesions I really don't know. <br />
That's the kicker. I can't really see it so it's hard to believe the shots are worth the aggravation. I can believe and have faith in a higher power, creator if you will, even though I can't see her, but my M.S. meds, not so much. Rationally I know I have been having less flares than in the past before Rebif. Sometimes I feel like my whole existence is just one big exacerbation, and I just deal with it until I fall because my gait is so unsteady, or I can't lift my arms, and call for IV steroid treatments. There are times when I feel like I'm only on medication to make my family happy. Mr. HubbyMan thinks I'm being selfish if I don't take the medications because inevitably he is the one who is inconvienced when I have a major flare and has to miss work. He wouldn't say that exactly, but that is it in a nutshell. Others feel I am not taking care of myself properly if I don't investigate every means and medication out there, and I'm just playing fast and loose with my health. Arrrrggggghhhh! I know I know who gives a shit what others think. Sadly this girl does.<br />
<br />
I want to give the new oral medications a try and will hopefully be a candidate. I have read some side effects such as nausea and possible heart/liver conditions. Yikes! I just want to feel good and not have to stick myself with a needle anymore. <br />
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So I will go this appointment and make my confessions, "forgive me Doctor, its been 3 months since my last injection". Do my penance, "three blood tests, eye exam, EKG, an MRI-with contrast, new oral meds with possible liver and heart damage".<br />
I will try to be a good M.S. girl and stay on my meds, but you know what they say about M.S. girls.........<br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-71750559115568841132015-01-03T11:15:00.000-05:002015-01-03T11:15:07.715-05:00Good enough for todayI know I haven't posted in over a month, but now it's time to get back on track. My last post was about how I planned to handle the holiday season this year. I'm happy to say things went pretty well overall. Of course there were a few bumps in the road. I still let myself get a little crazed about decorations for about a minute then I let it go. My daughters reminded me that they always love our house at Christmas time and that was enough for me. Cookies got done in batches over the course of a week and that was so much more relaxing than trying to do it all in one day. When the teens took a large batch to the elderly next door neighbor's house we recieve a phone call within minutes from son to say thanks and she was tickled to recieve the cookies. That made all of us feel pretty good. The 15 year old dancing queen/actor/playwrite/future Tony Award winner, designed this crazy ginger bread house, and printed up cards for all cousins. They loved them. The 17 year old swimmer/straight A student/lifeguard/swim instuctor/ future leading Neuroligist, reasearcher in the country, worked her booty off yet still made time to hang out with the family. I am going to miss this girl when she heads off to college in August. I will be getting over my driving induced anxiety to make the three hour drive to see her for sure.<div>
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I also touched on the fact that I plan on chaging M.S therapies this year. I had to reschule my Neuro appointment for later this month but I'll be sure to write and update on what I choose.</div>
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Trying to make this the best year possible my family and myself. I always felt in the past that I'm just not enough. Not a good enough wife, mom, housekeeper,friend,daughter,sister. This year that has to change. I'm starting to say "this is good enough for today, I'll see what happens tomorrow" I've already had a run in with the Hubby about housework and the such. And I quote" you just haven't been pulling your weight around here. I work my ass off and should be able to have a place to relax when I get home" He later retracted the statement saying he was mostly upset with th girls not picking up after themselves, but it still stings. Especially when he always makes suggestions for places I could work part time. I'm on SSDI. That's good enough for today.</div>
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<tr><td class="tr-caption" style="text-align: center;">Crazed Gingerbread House</td></tr>
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Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-12877403681134196672014-11-25T09:10:00.001-05:002014-11-25T09:10:14.548-05:00Neuro or GP who do you call first?I have a doctor appointment in a couple of hours with my GP, general practioner. He won't refill my Cymbalta script unless I see him. I really don't like going to the doctor for this kind of thing. I have nothing personal against my GP, he's great and all, but sometimes I feel like I'm wasting my time. After 24 years I still never know if I should run everything through Rock Star-my Neuro- or call the GP first. For instance, I know that UTI or bladder infection is very common in many of us with Multiple Sclerosis. Sometimes the symptoms are not as easy for us to recognize due to loss or diminished sensations in the area. If I do suspect something because of say, frequent urination, do I call GP or Neurologist? I hate to admit it, but I usually just buy a gallon of cranberry juice and hope for the best instead of calling either.<br />
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I honestly can't even remember why I talked to the GP about ant-depressents. I had been on Zoloft and didn't feel like it was helping any longer and he suggested I try Cymbalta. Side note here: I hate Cymbalta! If I miss one dose I experience bone-shaking withdrawals within hours. I also don't think it keeps me as steady as it should. I will speak with him about this today.<br />
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My question for you all is, who do you call first Neuro or GP? How do you know?Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-39589536015545848762014-11-23T14:15:00.000-05:002014-11-23T14:15:17.447-05:00Christmas fatigueI know I have written about Multiple Sclerosis fatigue in the past, but with the holiday season bearing down on us like a hungry bear in stream full of salmon, yeah that's how I think of the holidays sometimes, it might be good to revisit the subject. The holidays can bring out the best and worst in all of us. Add bone weary fatigue to the mix of gift shopping, feast making, and cookie baking, can make for a very stressful and disappointing time of the year. I know for myself I never feel like I am doing enough to make magical memories for my family. Every year I have visions of turning my home into a Christmas explosion of merriment and sparkle. I imagine baking loads and loads of cookies to give to our neighbors and friends in sweetly decorated boxes.<br />
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When I do venture down to the basement, just looking at the boxes of decorations makes me run/limp/crawl to the couch for a nap. Then the thought of baking cookies rears its ugly head as a reality and no longer a confection fantasy. I get overwhelmed with the amount of ingredients I need and don't have to make traditional Kolachke, Polish cookies, or Barazek, Lebanese Sesame cookies, and I have to have Anise cookies in the mix too. I have a very culturally diverse family. Speaking of overwhelmed, trying to find gifts for everyone is crazy hard for a person who hates to drive. I also have crowd anxiety. The whole shop til you drop experience is tiring and a little depressing. The holidays become especially disheartening when visiting with relatives who like to use the get togethers as a drunkfest- free- for- all.<br />
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This year I plan to do things a little differently. Well, actually a lot differently. My girls love the holidays. I plan to let them have free reign with the decorating this year. I have faith that they will make the house look great. Why not let them show off what they think Christmas decorations should look like to them? We will do it one room at a time so no one gets overwhelmed and cranky. Do you know that teen girls can be a little (a lot) snarky when they are cranky? Surprising, I know.<br />
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Cookies will be the pre-made sugar cookies I can get at our local GFC. GFC is a wholesale food store that is open to the public. The Husband uses them for work all the time. The cookies are pre-cut into holiday shapes and taste great. All we have to do is bake and decorate. They even have pre-cut gingerbread men!<br />
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Gifts are always tough for me because I agonize over choosing the perfect one for everybody. I love to make things, but not everyone appreciates the homemade Christmas gifts. There are certain family members who only see the dollar signs and have to compare what they spent to what you gave. Those people will be cut off. Husband and I decided we were going to limit spending to our daughters and our parents this years. It was becoming too much to buy for all the nieces, nephews, and the their kids. We have never received a thank you from any of them and honestly when we see them only a handful of times throughout the year It feels like we are only handing them money for reason.<br />
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We normally to go to my parents house to visit with my brother and his kids for a couple quiet hours on Christmas Eve and then we visit the entire day of Christmas at Husband's mom's house. It's crowded, uncomfortable and don't even think of eating until the entire clan arrives, which is never even close to being at the same time. So what do people do when they can't eat? They drink. A lot. Then when someone shows up with a pie and no whipped cream (us) well then those people (us) ruined the entire day and everyone (us) can just "Fuck off" according to the hostess (Husbands Mom). Classy right? Oh and did I mention the alcohol soaked political lectures from Step-dad #4? He gets all his information from hours in front of the TV watching nothing but Fox News. Are you jealous yet? This year Mom-in-law gets 2 hrs max and we are out of there.<br />
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I'm also not going to make my self crazy about what I can't do and just do what I can. Spending time with my girls and husband is what matters most to me. All the other stuff is just noise. Even though my daughters are 17 and 15 years old they can still find the magic in the simple Christmas lights we put on the house. They can find the joy in reliving memories as they pull out our old Christmas tree decorations. They feel excitement wrapping gifts for each other that they know will be loved. Through them I can love this season and let myself appreciate the little things. <br />
<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-18307726769770454302014-11-18T14:00:00.002-05:002014-11-18T14:00:37.056-05:00Changes and DecisionsThis month has just flown by in a flurry of college applications for my Swimmer Girl and loads of "sign this so I can do that" for my Dancing Queen. I have to believe that the amount of paper work involved in my childrens` basic high school education is solely responsible for the deforestation of entire tracks of land. Even though It's been a major feat of organizational skill that I simply do not naturally possess, I have been able to keep up with it all pretty well, I think. It's a big help that Swimmer Girl can drive now. Both girls have joined the high school drama club and are hanging around together like the did when they were little. Kinda cool I think, but of course I don't tell them that. I find it crazy that things are changing so fast in their lives, but they are finding their way back to one another just the same. When they were little they were inseperable and always called each other their best friends. That started to change when Swimmer Girl turned ten. The age when the "I hate you" hormones wake up and begin screaming through a girl's body. Now at 17 and 15 they are actually civil and even nice to each other.<br />
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The husband and I have been having some issues lately, but we are working on them. Mostly I think he's frustrated with work, and then dealing with my MS and anxiety is weighing on him. I tried to find a therapist, but our insurance won't cover a therapist and Military One Source, who we used about four years ago, won't sign off on just me for free counseling because I am on Cymbalta and that is considered a medical session. Seriously frustating. I just wanted someone to talk to. I have no friends I can talk things out with and I can't keep putting this stuff on my husband. We celebrated 27 yrs together back in October and although he has been with me from the beginning with the MS, there is a little part of me that suspects he really doesn't get it. I guess no one can unless they live it.<br />
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One big issue is that I have stopped taking my Rebif injections. I simply cannot bring myself to poke myself with another effing syringe. Husband thinks I am being very cavalier with my health and it makes him angry. He believes strongly that if I don't take my injections and suffer a relapse it is my fault and inconveniences everyone. I'm lost between "fuck you this is my life" and "you're right". It's not like I am refusing medication all together. I have been exploring and researching the oral meds available. I have an appointment with my super star Neurologist, he rocks, at the the end of December. I have told the husband I expect him to go with me and help me make this decision. He's completely on board with going to my appointment. Yay! I am concerned with the possible side effects and the fact that the orals really compromise my immune system.<br />
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Let's see anything else. Oh yeah, I developed this crazy ass rash on my left arm and my checking account was hacked into for about $1000.00 of online purchases one of which was $125.00 for Birkenstock sandels. Really Birkenstocks? More info on those exciting new developments to come.<br />
<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-5779332002662171542014-10-02T11:47:00.003-04:002014-10-02T11:47:57.669-04:00meThis is me. I am so lost in my own bubble I can hardly breath. It warps my vision of my self and my life. I cry and rail against it. I beat my fist against the walls in silent frustration. I want to burst this bubble, but I am so afraid of the fall. <br />
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My world is changing so fast. I want my children to stay and never leave. I don't want to be their Pooh Bear.<br />
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I want my husband to love me like he did when we were young. With passion and pride. I want to know we can continue to grow and make our dreams come true.<br />
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I want dreams. I want to be more than this existence. I want to write my words and make the world feel something.<br />
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I'm paralyzed, frozen. <br />
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This is me reaching out.Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-87121704095307040632014-08-26T11:26:00.001-04:002014-08-26T11:26:49.404-04:00RLS- Restless Leg SyndromRLS. You know that feeling at 2 a.m, when your legs decide "Hey let's get up right now and walk around the rest of the night!!!". They are like that overly excited, annoying acquaintance who just loves to talk about everything. All. The.Time. So you do the equivalent of nodding and listening politely and get up pace to around for a few minutes maybe even a half an hour, get a drink of water go back to bed and BAM it starts again. My legs are like " Oh, have I told you about my cat and all the tricks she can do?" I hate that! I know many of you do too. It feels like a cross between a cramp and a twitch and can affect any of my muscles from the calves to upper thighs. <br />
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Over the years I have found a few things that have helped me.<br />
<u>Hydration</u>:<br />
I notice if I don't drink enough water throughout the day I have symptoms. *Pee alert* Do not however, try to get all your hydration in an hour before bed because then you will have a completely different reason for not sleeping.<br />
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<u>Exercise:</u><br />
When I haven't worked up a sweat during the day my legs are ready to run a marathon at night. I know exercise may be hard for some folks, but try your best to do a little something everyday. <br />
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<u>Stretching</u>:<br />
I try to do some light leg stretches before bedtime. I have to shooo the dogs away from me during stretch time because I feel they are always criticizing my downward dog. <br />
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Even if I have done all these things I sometimes get the twitchies and I have few tricks for those times too.<br />
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<u>Long Socks</u>:<br />
For a long time I was wearing my husband's Air Force issued socks, but he got mad when I kept cutting the toes off. So. I bought a pair of compression socks that they sell at the pharmacy for diabetic patients. They work wonders to calm my jumpy legs. I cut the toes out because personally I don't like my toes being trapped and squished together. The socks still work fine.<br />
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<u>Warm Bath</u>:<br />
When I'm desperate to sleep the sound of running bath water at 2 a.m. is the best sound in the world to me. I run a warm, not hot, bath and soak for at least 30 minutes. I'll stretch and massage the calf muscles while I'm in there. It feels glorious. <br />
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<u>Heating Pad</u>:<br />
If I'm not able to get in the bath due to mobility I keep a heating pad near the bed. I put it on low heat and put it under my legs. I have a pad that will automatically shut off after 30 minutes. That's a good idea for safety if I fall asleep.<br />
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When I have to have Solumedrol treatments, it's inevitable that RLS will be along for the joy ride the steroids are taking my body on. I can do all these little tricks of mine and it just won't stop, so I'll have to go the dreaded medication route. I hate putting more crap in my stystem than I already do, but if I want to sleep and not become some crazed, roided up, MommyMonster, I go for the sleeping pills. I ask my Doc for a 5 day supply of Ambien. I don't know why but I have found medications like Nyquil do not work and actually make the symptoms of my RLS worse.I have tried Baclofen, but again I don't like to take too many pills and it left me feeling a little hazy during the day.<br />
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There are many more "home remedies" on the web that I haven't tried, a bar of soap at the foot of your bed, Vicks on your feet, magnesium supplements, the list goes on and on really. I just know the ones I wrote about work for me. I hope you find something that works for you too. If not we can always go for a 2 a.m. run together.<br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-90741446764604445672014-08-22T13:59:00.002-04:002014-08-22T13:59:44.090-04:00M.S. and DepressionIn light of the tragic news of Robin Williams passing last week I wanted to write on depression and Multiple Sclerosis. Depression is a common symptom of M.S. I have been having a hard time though because I really didn't know how to write about the subject without coming off as some kind of expert, which I'm not. I don't want to say here's what I have been through and I came through it swimmingly, because I didn't. I only know my experience. So here goes.......<br />
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When people ask me how I'm doing, like many people, I always reply "fine", or "good days and bad days, but I'm doing good". Those are my default answers, for my friends, family and doctor. I don't think they want to know I really feel. If were to be honest I'd say,<br />
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<i> "well, today I'm feeling an overwhelming sense of dread and self loathing, but It's better than the anxiety attack I had two days ago when I took the girls across town to the mall for school shopping"</i><br />
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<i> </i><i>" I pretty much hurt everywhere and live on ibuprofen and coffee."</i><br />
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<i>"I have been crying since I dropped the girls at school today, and I don't really know why"</i> <br />
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<i> "I'm lonely"</i><br />
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<i>"I feel like a failure"</i><br />
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<i>"No one really cares and I don't blame them I don't deserve it"</i><br />
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<i>"I wish I could just live by myself so I don't infect my others with my </i>mood<i>"</i><br />
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<i>"I'm live my life in a haze, never really seeing anything clearly"</i><br />
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<i>"I'm a terrible Ma. My girls deserve someone so much better"</i><br />
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<i>"I'm a burden and it will just get worse" </i><br />
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<i>"I'm stupid"</i><br />
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<i>"I can't do anything right"</i><br />
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<i>"I feel like someone dropped me in a pit and every time I try to crawl out of it I lose my grip and bring more dirt down on myself" </i><br />
<i> </i><br />
There are so many more statements I could share, but just thinking about them puts tears in my eyes. I'm angry. I feel like my body has completely betrayed me. <i></i>I run, I eat fairly well, but I just cannot seem to get any control over my body and brain. Control. So much stems from that one word. I feel like I lost control he day I was diagnosed twenty three years ago, and I have been scratching and clawing to get a little bit back everyday since then. I want so badly to have control over myself that I end up having control over nothing. I go about my life everyday, all the while this dialogue of negativity and self hate runs in the back of mind. Sometimes it's just a mosquito buzz,other times it's a raging screammo concert and my brain is the mosh pit.<br />
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While all this sounds very dire it's just a fact of my life and I have learned to live with it. I sometimes reach out when I feel like I'm slipping too far under, but I admit I don't that often because I know people have their own life dramas. My husband doesn't really know what to do with me during these episodes. He claims to never have had any of these thoughts or feelings. I'm jealous. Makes me feel like I'm less in his eyes because I can't snap out of it. I take my Cymbalta religiously every day<i> </i>and<i> </i> wonder what I would be like if I were not taking an anti-depressant. I have tried meditation, but my mind just spins too fast to really slow it down enough. Running works like meditation for me. I look forward to my girls getting home from school and Keith coming home from work because then I can immerse myself in their days. I don't have to think about me. Writing this blog helps greatly. It may not be written eloquently, but it's written from heart and and is a purge for my soul.<br />
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I know reading over this it doesn't sound like I have things under control, but I do to an extent. In my darkest days I know in my heart what would happen to my family if I were to give in and hurt myself and I can not do that to them. I won't do that to them. I will keep going on and doing my best as a wife and mother. I will give them all the love that I want to give myself. There is always going to be colder weather for me, but sometimes the sun shines through just enough to warm me.<br />
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I have included a link to National M.S. society's page about depression if you want a more technical take on it. I don't know if I have helped anyone, but at least you know you're not alone. Maybe hearing my words echoing your own with prompt you to seek help and guidance.<br />
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<a href="http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Depression" target="_blank">http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Depression</a>Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com2tag:blogger.com,1999:blog-3885802979303204311.post-11578066098145236562014-08-15T12:34:00.000-04:002014-08-15T12:34:34.476-04:00I want to run!I'm feeling pretty bummed today. The one thing that makes me feel normal and good about myself has been causing me a lot of pain lately. I can't hardly walk in the mornings because my right foot is killing me. My right ankle is swollen and my heel hurts to touch. I know it's probably Plantar Faciitis, but I haven't been to the doctor because I really hate going to the doctor. I have no patience for ailments other than the Monster in my life. Stupid? Yeppers, and now I'm paying for it. I don't know why this is happening now after all these years. My only guess is because I already had issues with slight foot drop in my right leg I have just made it worse somehow. Whatever the cause the result is an extremely unhappy me. I just want to feel good about myself and running was one thing I did that helped. I get frustrated because I'm not as fast as other women my age and I haven't really lost any weight, but still I love it. Sure I can go to the park and walk now that I "came out" to my running buddies there, but that's not what I want to do. I want to feel strong. I want to feel healthy.<br />
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My real issue is I liked the routine of running. Getting my clothes together in the morning, lacing up my shoes, driving to the park and running. Then I would get home jump in the shower and try to figure out the rest of my day. Now I am just floundering. I don't know what to do with myself. I can't concentrate on a project long enough to complete one. My house is a mess and I don't know where to start so I just don't. I am completely frustrated and overwhelmed. I don't know what to do. I feel like I just sit here on hold until I have to pick someone up from band, or take another one to work and then pick her up. It's only 11:30, but I have to think about what to make for dinner already because of all the running the girls have to do. I want to scream. I want to cry. I want to run away. I want to run away for just an hour. I want to run.Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-85175766066341984912014-08-07T14:15:00.000-04:002014-08-07T14:15:49.805-04:00Needle FatigueWith all the needle pokes I have endured in my life the last 20 plus years you'd think I'd have some bad ass, freaking epic tattoo to show for them. Instead I look like I have been attacked by an octopus with all the round welts all over my stomach, legs, and hips. They really aren't that bad, and eventually fade, but there is always a round, red mark somewhere on my body at any given day. Such is life in the body of an M.Ser.<br />
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Some days those little red marks bother me more than others. It's not really the welts, but the shots that cause them. There are days when I just can't even look at the syringe without wanting to cry. In my mind the needle swells to gigantic proportions and the little pin prick hurts more than labor. Dramatic much? You bet. <br />
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My Doc calls it needle fatigue. Sometimes a person encounters a mental block for whatever reason when it comes to self injections. I have been through this many times over the years. How did I get over it? Mostly guilt. I'll end up having a relapse and feel bad that I didn't do everything I could to control the Monster. Sometimes my Doc will use my kids against me and say I'm not being the best mother I can be if I don't take care of myself. There is a look that my husband gets when he finds out I have been shirking my shots that will do it for me too.<br />
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I have also found that if I make it part of my bedtime ritual I won't be able to relax until the deed it done. I'll lay out my shot and sharps bin, take a warm shower and inject away. Then I'll reward myself with a glass of red wine. Sometimes I'll treat myself to a mud mask or a paint my toe nails. I will tell myself I can't read one line in whatever fantasy/mystery/scifi book I'm currently living vicariously through until I inject. If I feel really anti-shot I'll throw a tweet out there and I know I can count on at least one of my fellow M.S. warriors to give me some encouragement. That really helps a lot, because I know they are going through the same thing.<br />
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While all these tricks keep me on track for the most part, much of keeping to my injection schedule is self control. I know there is some wiggle room with the schedule, but I tend to take it to a full on booty shaking twerking room place, and then before you know it I haven't done a shot in a week or two. I just have to do it every Monday, Weds, and Friday with no deviations.<br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-42519448927802319072014-07-28T20:14:00.000-04:002014-07-28T20:14:18.643-04:00I came out of the M.S. ClosetBeautiful day here in Ohio today. The husband and I went to the park and ran our usual three mile trail. It felt so great to get out and stretch my legs and fill my lungs with fresh air. It was not my easiest run, I was struggling to stay steady. It was better than last week though.<br />
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I was less than mobile last week and didn't get any runs in. I did however walk one and half miles one day. It took me 51 minutes. It was still an accomplishment for me because I actually went to the park and used my cane. I have always been very reluctant to "just walk" in front of the regulars I see at the park. Silly pride. I'll be sure to bring it up in confession next time I go. Going out there <i>and</i> bringing my cane was a big deal. This was the day I would come out of the MS closet to my fellow regular park goers. Of course I had the questions "<i>what happened?" "what did you do?". </i>I just took a deep breath and said "<i>well, I have M.S. and sometimes I have bad days when my legs won't work properly and this is one of those days". </i>After the initial shock and exclamations of "<i>you run so much though"</i>, "<i>you're so young"</i> and the ever popular "<i>you don't look sick", </i>I answered many questions, and I had to explain that the times they don't see me at the park are not because I'm on vacation. Those are usually my off <span id="goog_796101880"></span><span id="goog_796101881"></span>days and I was uncomfortable coming out with my cane. I received so much love and encouragement. I had an older runner that I always try to pace with, but never can, tell me <i>I </i>was <i>his</i> hero. It was a humbling experience.<br />
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Once I got on the trail I took the slow pace to really take in my surroundings. I forgot how beautiful the sun on the pond looks. I haven't really looked at the wildflowers in the fields in a long time. The squirrels and chipmunks play chicken with me on my runs, but just strolling along they don't even pay me any mind. I was able to forget my cane and drunken stride and take it all in. I was pretty whipped for the rest of the day after that.<br />
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While 51 minutes to walk one and a half miles may seem somewhat excessive to one person, it was time well spent to me.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-C2KPVLnCsgs/U9bhwwR2yBI/AAAAAAAAG2o/k4Y5RF8FR6U/s1600/IMG_20140724_095543_835.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-C2KPVLnCsgs/U9bhwwR2yBI/AAAAAAAAG2o/k4Y5RF8FR6U/s1600/IMG_20140724_095543_835.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><u>Enjoying the view of the pond.</u></td></tr>
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<a href="http://2.bp.blogspot.com/-BXeFoG9faec/U9bhw1Lw2pI/AAAAAAAAG2o/4KLV_DIkHe4/s1600/IMG_20140724_095558_451.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em;"><img border="0" src="http://2.bp.blogspot.com/-BXeFoG9faec/U9bhw1Lw2pI/AAAAAAAAG2o/4KLV_DIkHe4/s1600/IMG_20140724_095558_451.jpg" height="400" width="225" /></a></div>
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*Side note here. I had a ear and eye infection and was running a low grade fever. That is what caused my symptoms. I had what my neuro calls a pseudo-relapse. Once I got the infection cleared my symptoms went away fairly quickly. Remember to pay attention to your body and if any feels off call your doctor. Some people may be able to "gut it out", but not us. <br />
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<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-78071826743816506012014-07-23T09:41:00.001-04:002014-07-23T11:06:32.595-04:00Do you know when a relapse is coming on?I had quite a melt down two days ago. It was doozy.<br />
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<i>My life sucks, I have no friends, nobody cares about me, if I disappear right now no one would even notice until they run out of towels. I'm a horrible Ma because I didn't make dinner. Everyone deserves better that me. Running is stupid. My blog is stupid. I'm stupid. I shouldn't try to give people hope or advice because I suck.</i><br />
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You know that kind of poor me drivel complete with the torrent of tears coursing down my face and me wiping my nose on the front of my shirt. Yeah, gross, but you get the picture. The problem is those kinds of melt downs are a foreshadowing of a imminent relapse. My husband pointed it out years ago that although I am an emotional person by nature, when I go into full-on life is hopeless, ugly cry mode then something is coming. It usually happens when I have overdone and pushed myself beyond my limits. Everything starts to hurt more. My left shoulder blade is the worst. My family hate when I start to say my shoulder aches because they know they will all be hit up to rub it. When I say rub it I mean stick your elbow on the spot until I bruise. The everyday noises of TV and conversation make me feel edgy. The fatigue becomes crippling. My symptoms don't always end in relapse. If I slow down and keep myself
cool and stress free I can sometimes head it off. My issue is that I
don't always listen to my body or my husband.<br />
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I am hoping this coming week I can stave off a major relapse. Swimmer Girl has a swim meet this weekend a few hours away and I am not going. It makes me sad, but my husband is going. Honestly I think they need to spend some time together anyhow. She's sixteen and knows soooooooo much more than he does. Oy, that is another blog. I'm just going to rest. I also noticed my diet needs some tweeking. Too much sugar and simple carbs tend to do an number on my system and exaggerate my symptoms. I can't help it though, who can walk past a bag of peppermint patties and not want to "taste the sensation". It will be back to swiss chard, and kale for me. They have very strong anti-inflammatory properties. Combine with steamed or grilled fish and you have a filling and yummy meal. I have been up to my ears in zucchini so I chop one up and toss in, super yums.<br />
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Are there symptoms that you have, that tell you to slow down or a relapse is coming?<br />
Do you always listen to your body?<br />
Do you find that diet plays a part in managing your symptoms?<br />
<br />Anonymoushttp://www.blogger.com/profile/09080478913209215503noreply@blogger.com0tag:blogger.com,1999:blog-3885802979303204311.post-7414147524991746272014-07-19T18:33:00.002-04:002014-07-19T18:33:51.842-04:00Because M.S. can't stop me<div class="pQb" style="text-align: center;">
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I finally put this on my car. I had it made about six months ago after I ran my very half marathon. I never put it on the car. I put it in on hanging inbox, and looked at it everyday, but never put it on the car. </div>
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I'm not shy about talking about my M.S., but putting this on my car is an advertisement in a way. I wasn't ready to deal with being <i>that</i> open about my diagnosis. I also didn't want to come off as some uber motivational person who can "do anything she sets her mind to and you should to", because that is not me. I do want people to know M.S. doesn't have to stop you from doing things. It may alter how you go about achieving them, but it shouldn't be the reason you don't even try. I wanted to try and see if I could do it so I did. Will I ever run another half marathon? Probably not, but not because of M.S., because I just really didn't enjoy the training process. The constant worry that I was going to have relapse was always in the back of my mind. It was simply to much pressure for me. I love to run shorter races, 5k, 10k, and I will stick with those.</div>
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Multiple Sclerosis can't stop me from living my life. I hope it doesn't stop you either.</div>
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