tag:blogger.com,1999:blog-19165932926753078002024-03-19T04:47:01.691-04:00This Crafters Yarn
A place where I'll share my love of crafts, cooking, baking, surviving Thyroid Cancer, and living life with Myasthenia Gravis...Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.comBlogger57125tag:blogger.com,1999:blog-1916593292675307800.post-62320354969619767282020-01-01T11:40:00.000-05:002020-01-01T11:40:05.343-05:00New Year, New Me!<div style="text-align: center;">
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<span style="font-size: large;">New year, new me! We've heard that before. A new year of fresh starts and new beginnings. Resolutions meant to spark change in our lives, improve what we think needs to be "fixed", ways to make us better people, etc. This isn't my style! In some ways I'm more of a fly by the seat of my pants person. If I don't make resolutions, I won't be disappointed if things don't turn out as planned. </span></div>
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<span style="font-size: large;">What I have noticed is I'm becoming more of a "what if" type of person. What if my MG stops responding to treatment, what if I'm becoming a burden to my family, what if I'm not strong enough to keep my family together, what if I don't have the strength to go on. 2019 was a struggle because of the "What If's" and so many other things. My parents, and youngest sister passed on many years ago, my niece Theresa passed a little more than a year ago, my brother and sister in law moved cross country, and my other niece is making it her mission to challenge me every minute of the day. The feeling of lose and loneliness has totally consumed my entire being! I've struggled to find joy in all the positive things that 2019 had to offer. </span></div>
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<span style="font-size: large;">Today's post is the first of what I hope to be many in 2020. My place to be semi-anonymous, hide behind the curtain that is the internet, yet still feel secure in sharing the ups and downs of my life. <b style="color: blue;">MYASTHENIA GRAVIS </b>and <b style="color: purple;">DEPRESSION </b>be damned! </span></div>
Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com0tag:blogger.com,1999:blog-1916593292675307800.post-82898589277503639022015-06-22T09:00:00.000-04:002015-06-22T09:00:08.511-04:00Unhappy Anniversary!<div style="text-align: left;">
How do you mark an anniversary you'd rather forget?</div>
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Five years ago this week my life as I knew it changed forever. It was a week that would lead me down the path to chronic, incurable illness, to a life with Myasthenia Gravis!</div>
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When a life is changed because of illness or an accident one can't help but remember. Some celebrate a new chance at life, while some reflect on things they have lost, others fall somewhere in between. I'll admit, I find it difficult to celebrate a life with Myasthenia Gravis. But I also don't spend every waking moment feeling sorry for myself.</div>
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I've taken a few rides on the whoa is me train, and been the guest of honor at my own pity parties...I don't believe I acquired Myasthenia Gravis for some bigger purpose, to punish me for wrong doings in my life, or to strengthen my faith. People often ask "Why me?", I've thought it for a brief moment, but also thought "Why not me?" I'm no more special than anyone else who has meet with an unfortunate turn of events....<br /><br />I often replay the words my neurologist said to me in my head "I hope we never have to talk about this again, I want to test you for Myasthenia Gravis!" He and I are still talking about it today. We talk about what muscles aren't working as well as they should, what my new normal has become, and what treatments we have exhausted, or will try in the future, all in the hope of returning some normalcy to this crazy, illness ridden body. </div>
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There are days when I'm too weak to lift a coffee cup, hold my eyes open more than a slit, or have the strength in my hands to press a computer key...I must walk with a cane, use a walker or an electric wheelchair because I can no longer walk more than a short distance... I take medication and IV infusions that only improve my muscle use for a short period of time, and must rely on family and friends to help with some of the most basic things some take for granted. </div>
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I do find some irony in the fact that I have acquired Myasthenia Gravis in the month of June! For those who haven't noticed:</div>
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<b>JUNE IS MYASTHENIA GRAVIS AWARENESS MONTH</b>! So please join me in spreading Myasthenia Gravis awareness as part of my Unhappy Anniversary celebration, I can't think of a better gift to receive... </div>
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Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com1tag:blogger.com,1999:blog-1916593292675307800.post-14467481843593836532015-06-15T13:44:00.001-04:002015-06-15T13:44:42.060-04:00Can There Be Too Much Awareness?<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;">You may be wondering why I ask...<br />June is Myasthenia Gravis Awareness Month<br />MG is a rare, incurable, autoimmune neuromuscular disease. </span><br />
<span style="font-size: large;">It affects the voluntary muscles, it can cause weakness of your arms and legs, blurred or double vision, slurred speech, and impair the ability to chew, swallow, and breath.</span><br />
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If you are a person living with such a disease there can <b>NEVER </b>be too much awareness. You spend every minute of every day hoping someone will find a cure, or a better treatment. You hope and pray that when you post something on social media it gets shared, liked, retweeted, or commented on. You hope a celebrity will take up your cause and agree to be a spokesperson for your disease. You try to dream a challenge that will flood the internet with inspiration, awareness and donations for a cure.<br />
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<span style="font-size: large;"><b>ALL YOU REALLY WANT IS SOMEONE TO PAY ATTENTION TO YOUR DISEASE!</b></span><br />
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So <b style="font-size: x-large;">PLEASE </b>don't ignore that post, tweet or video, someone's life may depend on it...<br />
Someday it might be <b style="font-size: x-large;">YOUR </b>life, or that of <b style="font-size: x-large;">YOUR CHILD...</b><br />
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If you would like learn more visit<br />
The Myasthenia Gravis Foundation of America<br />
<a href="https://www.blogger.com/"></a><span id="goog_673783097"></span><span id="goog_673783098"></span><a href="http://www.myasthenia.org/">www.myasthenia.org</a><br />
<a href="https://www.blogger.com/"></a><span id="goog_1806357317"></span><span id="goog_1806357318"></span><br />
or follow #IhaveheardofMG & #stompoutMG on twitter.com<br />
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Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com0tag:blogger.com,1999:blog-1916593292675307800.post-38806967854918138392014-11-20T13:18:00.000-05:002015-07-17T16:18:36.968-04:00Liquid LighteningToday a brief lesson about Intravenous Immunoglobulin Therapy or IVIG for short...<br />
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IVIG is a blood product created from the antibodies of approximately 10,000 healthy blood donors. Plasma is screened for diseases like Hepatitis, HIV, and many others. The effects of the treatment vary from person to person, and can last from a few weeks to a few months. IVIG is used to treat four major disease categories, they include primary immune deficiencies, acute infection, and autoimmune diseases such as Myasthenia Gravis.</div>
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Infusions are done in hospitals, infusion centers, or in the comfort of ones home. Where you are infused will depend on the type of medical insurance you have, and what they will or will not cover.</div>
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The amount of medication you receive is based on weight and medical condition. The time it takes to infuse is based on your doctors recommendations and your ability to tolerate the administration rate. </div>
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I receive my infusions at home. My medication and supplies are prepared by a specialized pharmacy and delivered to my home prior to my scheduled infusions, they also arrange for the nurses who administer my treatment.</div>
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It's very important to be well hydrated, this helps to eliminate or reduce side effects. I start to increase my fluid intake the day before...On the day of infusion I pre-medicate myself with diphenhydramine and acetaminophen. They are used to prevent headaches and rashes, two of the biggest side effects. My nurse starts an IV line, then prepares the medication. A pump is used to deliver the IVIG at a controled rate. Your blood pressure, temperature, and heart rate are monitored frequently during the infusion. IVIG is started at a slow rate of infusion and increased to a comfortable level to reduce the chance of side effects. In my case the infusion lasts about 5 to 6 hours.<br />
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There are always complication and side effects to be aware of. They include blood clots, pulmonary edema, kidney disease, aseptic meningitis, and anaphylactic shock. Headache, fever, chills, dizziness, nausea, vomiting, rapid heart rate, and fatigue are the most common side effects. They can be reduced or eliminated by slowing down the infusion rate and increasing fluids.</div>
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For some the benefits of IVIG outweigh the risks associated with treatment. In my house we call IVIG "Liquid Lightening" because of the extra strength and energy I get from my treatments. It has helped with my limb weakness, blurred vision, and fatigue. I can rely on my family just a little less to help me do every day things. I enjoy being able to bake. cook, and indulge in my favorite hobbies, even if it's only for short periods. I still nap daily, use a cane for balance, or use a power chair if I need to go to more than one store during a shopping trip. But those are minor inconveniences. My life isn't what it was before Myasthenia Gravis, but I am not going to let it destroy my spirit...<br />
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To those who donate blood I want to say <u style="font-weight: bold;">THANK YOU </u> your generosity is appreciated beyond measure, for that I am eternally grateful...</div>
Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com1tag:blogger.com,1999:blog-1916593292675307800.post-1104053637387176472014-11-12T19:56:00.000-05:002014-11-12T19:57:58.448-05:00It's Been So LongI must apologize for being away so long...<br />
So much has gone on since my last post.<br />
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I was so inspired by other bloggers to share my story, but sadly MG has gotten in the way.<br />
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My medical issues have almost completely taken over my life. It was the last thing I had expected. The days are filled with doctors appointments, medical testing, and IVIG infusions. It's like a merry go round, the cycle repeats itself over and over again. I feel like I'm on a treadmill that never stops running...<br />
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New health issues have shown themselves...there are more battles ahead, more dragons to slay...<br />
I hope to post several times a week, but will make no promises.<br />
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Tomorrow is infusion day, I'll take you along for the ride...see you then!Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com1tag:blogger.com,1999:blog-1916593292675307800.post-36715181180905842702013-07-29T14:06:00.000-04:002013-07-29T14:06:35.857-04:00My Bedroom, My Retreat, My Prison<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;">When you live with Myasthenia Gravis the weather can be your best friend or your worst enemy.</span></div>
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<span style="font-size: large;">During the recent heatwave the monster reared it's ugly head with a vengeance. My MG affects my limb girdles the most. So I always have weak legs, arms, and shoulders. Some days it's harder to walk then others, it only gets worse as it gets hotter. There are days when a cane is enough support, other times a rollator, most recently I've "upgraded" to a power wheelchair. </span></div>
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<span style="font-size: large;">My sister and I needed to run a few errands, so with the heat we decided it was best to use my chair. We decided to go for breakfast, things went downhill from there. Just the few minutes in the heat on the way into the restaurant caused my ptosis to kick in. My arms became so weak I couldn't lift my coffee mug, I had barely enough strength in my hands to hold my fork! What should have been a pleasant, enjoyable breakfast turned into a freak show. When you body starts to flop and droop and you can almost feed yourself people stare. I've become accustomed to the stares, but it's a feeling that never gets easier.</span></div>
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<span style="font-size: large;">The AC in the van was my respite, I regained some strength on the way to our next destination. A quick stop at the grocery store proved uneventful. I rolled a few stores away and entered the cell phone store. It was as cold as a meat locker, I could have stayed there all day. Much to my disappointment it was time to return to the inferno outside. I wheeled up the ramp into the van. I was only in the heat a few minutes, but I could feel the strength in my muscles slip away. My sister helped me get on my seat and get my legs into a good spot, I had turned into a useless rag doll that could hardly keep itself upright...Thank GOD for seat belts!</span></div>
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<span style="font-size: large;">By this time rest and cool air was what I needed most. I thought my recliner would do the trick, but NOOOOOOO, not today. So into bed I went. I found sanctuary in the comfort of pillows that could be placed just so, providing support for limbs to weak to support themselves. A cool drink in a light weight tumbler with a lid, placed within easy reach. </span></div>
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<span style="font-size: large;">My "RETREAT" is full of all the comforts a person with a chronic illness might find useful. Books to read, if you have the strength to hold them, or your ptosis or blurred vision prevents you from seeing clearly. TV, movies or videos are an option, but that too becomes a problem when your vision is impaired. So music has become my "go to" when I am forced to spend time in my "RETREAT". I listen to Pandora, or my playlists on my MP3 player. When you are forced to spend time in bed you want to have all the creature comforts around you. Unfortunately what was once a "RETREAT" becomes a "PRISON". It takes time for extremely weak muscles to gain strength. You get tired of bed, tired of the walls around you, tired of the ceiling above your head. All you want is the "MG WARDEN" to release you on bail or grant you parole! But all to often we must serve out our full sentence in our own personal "PRISON" just waiting for the "MG WARDEN" unlock the cell...</span></div>
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<span style="font-size: large;">So to all my fellow "MG PRISONERS" ...stay cool, rest as much as possible, and <i>ALWAYS FACE MONSTER HEAD ON, </i></span><span style="font-size: large;">and keep a </span><i style="font-size: x-large;">"GET OUT OF JAIL FREE" </i><span style="font-size: large;">card handy!</span></div>
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Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com3tag:blogger.com,1999:blog-1916593292675307800.post-2060495156655841792013-02-03T16:12:00.000-05:002013-02-03T16:12:21.598-05:00A Day of Rest...NOT!For many people Sunday is a day of rest. Some choose to relax in pajama's while reading the paper and doing the NY Times crossword puzzle. Others spend time shopping, racing at a frantic pace from store to store to get the best bargains. While others spend time at a house of worship before enjoying a quiet day with family and friends.<br /><br />For me it's sort of a mish-mosh of things. I start my Sunday like most days. I wake to an alarm that is set about a half hour before I need to get out of bed. This allows me time to take medication that gives me strength in my muscles to go about my day. Then and only then can I proceed as others do! If I don't allow myself this time, I have to rely on the help of others before my day really gets started. It's difficult to go from being a caregiver in your professional life, to the person needing assistance and care in your personal life.<br />
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I use Sunday to decide what I might want to make for dinner for the week, catch up on laundry, do some light housekeeping, and care for my niece who is also disabled, while my sister is at work. This doesn't always work out. Like many with a chronic illness some days are better than others. Even the best plans must be rearranged to allow for sudden muscle weakness or fatigue when <b><i><u>Myasthenia Gravis </u></i></b>decides <u style="font-style: italic; font-weight: bold;">IT</u> is in charge of your body. The old saying about <i>The Best Laid Plans of Mice and Men </i>is an everyday reality for many of us.<br />
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This weeks menu will include Unstuffed Cabbage, Chicken Fried Rice, Vegetable Soup, and some other undecided selections. I've chopped and peeled to my hearts content. All that remains is to stir fry the Chicken Fried Rice. The aromas that have filled my house today are mouth watering to say the least...<br />
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I think a nap is in order, and perhaps I will "tackle"some treats for "The Big Game" or it will be Tea & Scones to enjoy while watching "Downton Abbey"...better not plan too far ahead!<br />
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Enjoy your day, no matter what you have planned...Remember even a bad day can be looked upon as a blessing...you never know what tomorrow will bring so make every moment count...Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com5tag:blogger.com,1999:blog-1916593292675307800.post-58374045019912227232013-01-29T16:31:00.000-05:002013-01-29T16:31:46.153-05:00Goodbye Old Friend...The other day I had to say goodbye to an old friend...<br />
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To some this will sound silly, but to others it will make perfect sense. After many years of faithful service my trusty Kuhn Rikon vegetable peeler has fallen apart...<br />
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This wasn't just ANY peeler, it was one of my first purchases from a gourmet cooking store...I paid more than anyone should EVER pay for a peeler. It was made in Switzerland and could only be purchased at Williams Sonoma via catalog or in the store...this was long BEFORE the Internet and Amazon.com days.<br />
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It was one of the first U shaped peelers available in the USA, she was as sharp as could be and felt great in your hands. No old fashioned swivel peeler could compare. I could peel at the speed of light!<br />
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As someone with a neuro-muscular disease replacing her has become an arduous task...There are so many things to consider when you have weak hands...<br />
<br />Not just any peeler will do. It must fit in your hand just so, the handle can't be too bulky, but can't be too thin either...A soft grip is easier to hold than a hard plastic grip. ...will it make your hand tired when you use it, will it slip and cause you to cut yourself, will it withstand being dropped on the floor and get run over with a walker or powerchair?<br />
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So will it be a new Kuh Rikon, an OXO Good Grips, or a Kitchen Aid...only time will tell</div>
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Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com4tag:blogger.com,1999:blog-1916593292675307800.post-3699210755897238712013-01-19T16:11:00.003-05:002013-01-19T17:18:23.143-05:00The Face Of Myasthenia, When the MONSTER Strikes<div style="text-align: left;">
<span style="font-size: small;"></span>Sorry I haven't posted... </div>
There was so much I wanted to say...<br />
But <strong><em>MYASTHENIA</em></strong> <strong><em>GRAVIS </em></strong>got in the way...<br />
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It's <strong><u>HARD</u></strong> to <strong><u>TALK</u></strong>, when your tongue feels like it's bigger than your mouth and doesn't move to correctly to form words...<br />
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It's <strong><u>HARD</u></strong> to<strong><u> READ</u></strong>, when you can't keep your eyelids open, or you lose focus to see the printed page...<br />
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It's <strong><u>HARD</u></strong> to <strong><u>WRITE</u></strong>, when your hands don't have the strength to hold or move a pen...<br />
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It's <strong><u>HARD</u></strong> to <strong><u>BREATH</u></strong>, when your chest doesn't rise and fall deep enough to get a real breath...<br />
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It's <strong><u>HARD</u></strong> to <strong><u>WALK</u></strong>, as you struggle to lift legs that feel like you're wearing cement blocks instead of shoe's, or your legs fall out from under you causing you to fall to the ground...<br />
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It's <strong><u>HARD</u></strong> to <strong><u>EAT</u></strong>, when your jaw gets so tired you can barely chew...<br />
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It's <strong><u>HARD</u></strong> to <strong><u>USE</u></strong> your <strong><u>COMPUTER</u></strong>, when you need to be propped up in a recliner with pillows to keep your head in place, your elbows propped up so your arms don't fall to your sides and then can't lift them back up without the help of others...<br />
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It's <strong><u>HARD</u></strong> to <strong><u>DRIVE</u></strong>, when you can't sit upright in the seat without being strapped in like a ragdoll, keep your head up without a neck brace or you raise your arms to steer the car...<br />
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<object height="1" id="plugin0" style="position: absolute; z-index: 1000;" type="application/x-dgnria" width="1"><param name="tabId" value="{C335F996-20C6-4642-B7AC-AEE3F038B357}" /></object>It's <strong><u>HARD</u></strong> to feel <strong><u>USEFUL</u></strong> & <strong><u>PRODUCTIVE</u></strong>, when you need help dressing, bathing, and having someone help you sit up in a bed because there is no strength in any of your muscles to do even the most basic of daily functions...<br />
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It's <strong><u>EASY</u></strong> to <strong><u>CRY</u></strong>, when you feel alone and helpless...when you think no one understands... when you can no longer help care for your nieces like you did before...<br />
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It's <strong><u>EASY</u></strong> to <strong><u>LIVE</u></strong> with <strong><em>MYASTHENIA GRAVIS, </em></strong>when you have been blessed with wonderful family and friends you can count on no matter what...<br />
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It's <strong><u>EASY</u></strong> to <strong><u>LIVE</u></strong> with <strong><em>MYASTHENIA GRAVIS, </em></strong>when you have faith that <strong><em><u>GOD </u></em></strong>will help your doctors and researchers find a cure for neuro-muscular diseases in <strong><em><u>YOUR</u></em></strong> lifetime...<br />
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<tr><td class="tr-caption" style="text-align: center;">BEFORE MYASTHENIA (4 YRS AGO)<br />
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<tr><td class="tr-caption" style="text-align: center;">SINCE MYASTHENIA (TODAY)</td></tr>
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I wasn't able to get a full picture of myself this morning, it has been a rather difficult few weeks. I was propped up in my chair with my cervical collar holding up my head. I couldn't lift my arms high enough to get a better picture! So no hair or make-up, it been a total pajama day! </div>
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This isn't just <strong>MY</strong> <strong><em><u>MG</u></em></strong> life, it's my families and those of other Myasthenics and their families too!<br />
To learn more visit <a href="http://www.myasthenia.org/">Myasthenia Gravis Foundation of America</a></div>
Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com11tag:blogger.com,1999:blog-1916593292675307800.post-24152465370177442272012-08-23T18:51:00.000-04:002012-08-23T18:51:43.474-04:00The Butterfly House...Haley came to visit a few weeks ago, my sister and I wanted to do something different so we decided to take a trip to the Butterfly House at the Rutgers University Earth Center.<br />
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It was a beautiful Sunday afternoon, although it was quite hot there was a beautiful breeze. It made the heat quite tolerable.<br />
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The Monarchs were floating from flower to flower...If you looked closely you could find butterflies in various stages of life...cocoons were hanging from the leaves of plants, some were empty, while others awaited the emerging beauties.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtq_9uRwQcrEwvK5vQy4NbmuDlQ4rRKTVDLpCSl3WVC0JthE4qGc7Rtr_2jOosN0_HWEPDDTrkZSzUTKuMMXMY39NMKArX99HfHlPxdQBYVeV0d22xhtmNOiGloNvKrYymUxgKRGlQGZl-/s1600/DSCN0328.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtq_9uRwQcrEwvK5vQy4NbmuDlQ4rRKTVDLpCSl3WVC0JthE4qGc7Rtr_2jOosN0_HWEPDDTrkZSzUTKuMMXMY39NMKArX99HfHlPxdQBYVeV0d22xhtmNOiGloNvKrYymUxgKRGlQGZl-/s320/DSCN0328.JPG" width="320" /></a></div>
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Coneflowers, Sunflowers, Butterfly Bushes, and many other served as places for the butterflies to sun themselves, rest, and enjoy the sweet nectar the beautiful blooms had to offer.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizFKAS3XWlqBwmfMq2xMOg-GiVWVoMpehuToym5b13Mf4L8vOPNzGGFWeyHobdYbqbBQ8HLHw7q2GKHHX20SoizpQN4IojAaViajQz92cxpZTjsl0VjbZub6GkZaU4I6ldTx_E2XIyixaO/s1600/DSCN0333.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizFKAS3XWlqBwmfMq2xMOg-GiVWVoMpehuToym5b13Mf4L8vOPNzGGFWeyHobdYbqbBQ8HLHw7q2GKHHX20SoizpQN4IojAaViajQz92cxpZTjsl0VjbZub6GkZaU4I6ldTx_E2XIyixaO/s320/DSCN0333.JPG" width="320" /></a></div>
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Sunflowers</div>
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<img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbO0Y3CLOWB1QQUV0_kndL2CPJM35jX5uSj4MgOKjA3Hlze1oPZtA0R1nym5ZDaeC1jBWUpC4LpgAktMVHBlBfdgh3BrwgmiUXt_tXasZtJP7AvFJpGjF-MnYU74BOIvP69ZqplmkY1Wha/s320/DSCN0321.JPG" width="320" /></div>
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Clematis</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWEV2IIrvnE8jAmgwMK0GM2S7q8PADK3aua33hxwnDM799PEJ618ruAPvNY4lCpj6FotYc2WNCWW3tiCHpL0TXqu5Vm_VOLfULNwzbhoDDX3zcAyn5aeiTtVVor90MfBzo3fuNVkNT9-Ey/s1600/DSCN0314.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWEV2IIrvnE8jAmgwMK0GM2S7q8PADK3aua33hxwnDM799PEJ618ruAPvNY4lCpj6FotYc2WNCWW3tiCHpL0TXqu5Vm_VOLfULNwzbhoDDX3zcAyn5aeiTtVVor90MfBzo3fuNVkNT9-Ey/s320/DSCN0314.JPG" width="320" /></a></div>
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Taking a sip from the Butterfly Bush</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw4L4T2oRHr9Yi4q5N-ZhM_nMAiLoaU8fIiJXaMqv_DUMMh9kihMcwepR_avTmfexoIHQDNJwB8PEaHgci_-xPDSvYeSdF9AXicGWAse9bVfX_naJfcUKrdIQzaf3VmE1snPLN2O8MEJ0v/s1600/DSCN0334.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="271" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw4L4T2oRHr9Yi4q5N-ZhM_nMAiLoaU8fIiJXaMqv_DUMMh9kihMcwepR_avTmfexoIHQDNJwB8PEaHgci_-xPDSvYeSdF9AXicGWAse9bVfX_naJfcUKrdIQzaf3VmE1snPLN2O8MEJ0v/s320/DSCN0334.JPG" width="320" /></a></div>
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We also spent a little time visiting the Children's Garden...There were several areas for children to explore and play amongst the various plants. Haley loved the Teepee made of Sunflowers and the tunnel covered with squash vines. She was so excited to see the tiny squash, because it was so early in the growing season most were only about 2 inches long! </div>
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The grounds of the Earth Center is also home to the Master Gardeners program as well as an ecology center. It's beautiful place for a picnic, a hike amongst the nature trails or just a quiet place to spend an afternoon. We can't wait to visit again!</div>
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Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com3tag:blogger.com,1999:blog-1916593292675307800.post-4118976871987078202012-05-04T15:13:00.002-04:002012-05-04T15:13:56.541-04:00It's Been a Rough Couple of Weeks<span style="font-size: large;">Things have been very crazy at my house for the last few weeks...</span><br />
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<span style="font-size: large;">My beautiful niece Theresa had to have hip replacement surgery a few weeks ago. She's a very happy smiling girl on most days...</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXb6SU9EvGj7V7uLUEEauTG6kqxdjX_YCGqs5EdRZAVKeomPe7HyJQDtOw8llsY9nflvIxIx55ylvhJMu0wZeke48WZseQArT_hlRXzh70U2A3aNlZyRAXfQPspazf6alN81kF2rBzQVm2/s1600/DSCN0140.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXb6SU9EvGj7V7uLUEEauTG6kqxdjX_YCGqs5EdRZAVKeomPe7HyJQDtOw8llsY9nflvIxIx55ylvhJMu0wZeke48WZseQArT_hlRXzh70U2A3aNlZyRAXfQPspazf6alN81kF2rBzQVm2/s320/DSCN0140.JPG" width="320" /></a></div>
<span style="font-size: large;">But not long after returning home from surgery she became fussy and was experiencing a great deal of pain...She returned to the hospital for follow-up care. It was soon discovered that she had pancreatitis, her doctors are working very hard to find the cause of her problem...she is receving nutrition through a special IV line, her newly replaced hip has also dislocated several times...The doctors have placed her in a special cast to keep the hip in place...My sister is a strong, caring Mother, but sometimes it's so very difficult. She loves her little angel more than anything else in the world...It breaks my heart that I can't be with them...</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgViM9GD6o-vamxm-yZ0fI7LxsVVrsgkEBHQfEzJK3uKLuKS9kXVT5GJ908bTAXs_KhfL2ZMOPKxC5sdZGxV7aUE-pJdybPjhPWont_V8eaNEj-D46VUpjauSURUC6WiXDRNerM8HdLF44o/s1600/TC+Casts.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgViM9GD6o-vamxm-yZ0fI7LxsVVrsgkEBHQfEzJK3uKLuKS9kXVT5GJ908bTAXs_KhfL2ZMOPKxC5sdZGxV7aUE-pJdybPjhPWont_V8eaNEj-D46VUpjauSURUC6WiXDRNerM8HdLF44o/s400/TC+Casts.jpg" width="297" /></a></div>
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<span style="font-size: large;">Love you so very much my little angel...</span></div>
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<span style="font-size: large;">Sending good thoughts and prayers your way...</span></div>
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<span style="font-size: large;">God has you in his care, all will be well</span></div>
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<br />Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com3tag:blogger.com,1999:blog-1916593292675307800.post-16839565812544158372012-04-19T11:55:00.000-04:002012-04-19T11:56:12.562-04:00The Scent of Spring...<span style="font-size: large;">Here in NJ we experienced a very mild winter and quite a few above average temperatures this spring. Today is the exception, we are exactly where we should be temperature wise. </span><br />
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<span style="font-size: large;">I turned on the coffeemaker first thing as I usually do, the smell of freshly brewing coffee began to fill the house. I opened the back door to let the suns rays warm the kitchen when I was overcome by the smell of lilacs drifting on the morning breeze. I couldn't help but take a deep breath...spring has finally come to my backyard!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIRLKTm8ZjEhcbOtBSEMY9qp2u7kfqGnkrE_zZGfzfDPqrlpetVvdGCH7v4nJVN47Sczqevt7oPxHVr15YNdcRmyu6YCQlGLh9v0gDn7xGdkj3OIUUdqBRzH91M3-Mhb4Xefrsv_JOVN2r/s1600/P1000142.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIRLKTm8ZjEhcbOtBSEMY9qp2u7kfqGnkrE_zZGfzfDPqrlpetVvdGCH7v4nJVN47Sczqevt7oPxHVr15YNdcRmyu6YCQlGLh9v0gDn7xGdkj3OIUUdqBRzH91M3-Mhb4Xefrsv_JOVN2r/s320/P1000142.JPG" width="240" /></a></div>
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<span style="font-size: large;">I have been blessed with a beautiful lilac bush courtesy of my neighbors. I've never planted one, for many years their bush hung over my fence and I clipped bouquets to my hearts content. Several years ago some branches made there way under the fence and they have spread and grown stonger, as a result I now have a beautiful lilac bush to call my own...Time to cut a bouquet for the kitchen table...</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqSTah3HzmBU_fGLzgmbhuUZawSt7PLCtXbIMciSZGjqX2n5RdNQghu9zd84Jlrqyj6pBeJtDtKfOR2c0LLEUiNqjXVkweMjpjl8Xlc9qfQHK8a8y0N41p32MlqmF1K8PmYiEuoenCHDXc/s1600/P1000147.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqSTah3HzmBU_fGLzgmbhuUZawSt7PLCtXbIMciSZGjqX2n5RdNQghu9zd84Jlrqyj6pBeJtDtKfOR2c0LLEUiNqjXVkweMjpjl8Xlc9qfQHK8a8y0N41p32MlqmF1K8PmYiEuoenCHDXc/s320/P1000147.JPG" width="320" /></a></div>
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</div>Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com2tag:blogger.com,1999:blog-1916593292675307800.post-43867839738378909822012-03-21T15:48:00.000-04:002012-03-21T15:48:31.050-04:00A Few More Projects...<div style="text-align: center;">
<span style="font-family: Arial; font-size: large;">Here's a quick look at my March projects for </span></div>
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<span style="font-family: Arial; font-size: large;">the <a href="http://www.scrapperscove.com/">Scrappers Cove </a> drawing.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXUWEMakljVZZaluUOQtjs7TNJQsAwYYrqglXERzGJE_QUYaaDPrF7PWqrQ8WA0kxZ65y8MzXJkaI1sTOncTzbM1ZpIAZxMh94HuBWpcEP2W0BXlzZx21W8EFMVKst9Vqf2IvFJx7TrTrx/s1600/DSCN0300.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXUWEMakljVZZaluUOQtjs7TNJQsAwYYrqglXERzGJE_QUYaaDPrF7PWqrQ8WA0kxZ65y8MzXJkaI1sTOncTzbM1ZpIAZxMh94HuBWpcEP2W0BXlzZx21W8EFMVKst9Vqf2IvFJx7TrTrx/s320/DSCN0300.JPG" width="320" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The card was made using paper from My Minds Eye's Lost and Found Collection, </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I love the vintage look of this paper.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC_C7zhjfkhu4lBvQ-9KlS9sbOffpHGctx7NP0m9_iPDnLZLD_LYa6Y9W0tVTJvpiwIN6oDiUjsfPEydKQMgvbehRSCgImBiXwvuQLPUHqg_YDjWqyazD1CqUzMi558cRBfHuz4a5imorA/s1600/DSCN0298.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="292" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC_C7zhjfkhu4lBvQ-9KlS9sbOffpHGctx7NP0m9_iPDnLZLD_LYa6Y9W0tVTJvpiwIN6oDiUjsfPEydKQMgvbehRSCgImBiXwvuQLPUHqg_YDjWqyazD1CqUzMi558cRBfHuz4a5imorA/s320/DSCN0298.JPG" width="320" /></a></div>
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<span style="font-family: Arial; font-size: large;">For the layout we were given paper from Authentique and </span></div>
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<span style="font-family: Arial; font-size: large;">Bo Bunny. I normally don't use a lot of purple when I scrap, but I</span><span style="font-family: Arial; font-size: large;">decided to play off the purple trim instead of the blue floral print.</span></div>
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</div>Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com1tag:blogger.com,1999:blog-1916593292675307800.post-38798088019274559412012-02-24T13:41:00.005-05:002012-02-24T13:52:49.796-05:00It's Been a While!!!<span style="font-size: large;">It's been quite a while since my last post...Honestly sometimes I feel at a loss for words. I follow some very inspiring people, they have such a gift for words. For me, it's not so easy.</span><br />
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<span style="font-size: large;">Things are about the same on the MG front, no worse no better. For that I am truly thankful. So today I'll share some of my recent scrapbooking and card making projects.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwdonY4tVYecjib4UZQMz9m9ZGtY3wsvmH1m8DUy5nPRhX2XoAY2qYRwfR3cflmlfmP1KX2MUERrjWIXfaR22OcCKzlNmOFctc3wyP0CQ-DEOpHyu1prabx0n2qtG5zDlwnHCkYIMN1elj/s1600/2011-12-09_12-04-09_483-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="219" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwdonY4tVYecjib4UZQMz9m9ZGtY3wsvmH1m8DUy5nPRhX2XoAY2qYRwfR3cflmlfmP1KX2MUERrjWIXfaR22OcCKzlNmOFctc3wyP0CQ-DEOpHyu1prabx0n2qtG5zDlwnHCkYIMN1elj/s320/2011-12-09_12-04-09_483-1.jpg" width="320" /></a></div>
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<span style="font-size: large;">The Myasthenia Gravis group I belong to exchanged Christmas cards this year, MG is also called the snowflake disease because like snowflakes, MG affects everyone differently so I used one on the card...The snowflake was removable so it could be used for another purpose.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj72GHar5dv43cH6p8lj65d0d1N68CH-nDgwPU8CZkV3OyhBYRbWBnISIJkZ6uwZIEonXDecdeMtMGnT2rjKlWes7nYHCamS8FwOypnr0OYVUPwTFPe9Z5RvvFYB3HYyXOsDvOeoDJbHXsE/s1600/2011-12-12_11-55-36_322.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="210" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj72GHar5dv43cH6p8lj65d0d1N68CH-nDgwPU8CZkV3OyhBYRbWBnISIJkZ6uwZIEonXDecdeMtMGnT2rjKlWes7nYHCamS8FwOypnr0OYVUPwTFPe9Z5RvvFYB3HYyXOsDvOeoDJbHXsE/s320/2011-12-12_11-55-36_322.jpg" width="320" /></a></div>
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<span style="font-size: large;">Our local scrapbook store holds a monthly drawing for a gift certificate. Here's my January entry. This layout features my niece Theresa, she just LOVES the snow. Although she can't play in the snow like others she enjoys when you toss snow at her, she laughs and smiles so much!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIBGR62ygnQt4Ouqqde1jGquM9rahhB4bwiunecyBR8Cq-7HGT8KjzoWdFp8wclC98QRten0WIUNN9kAMaZHhuIDRivyhuP7OxxVqFCk_arV6hBVYD_AGQRmWGzWZuT9L7Lu4fNBLgnrj5/s1600/2012-01-08_12-03-38_331-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIBGR62ygnQt4Ouqqde1jGquM9rahhB4bwiunecyBR8Cq-7HGT8KjzoWdFp8wclC98QRten0WIUNN9kAMaZHhuIDRivyhuP7OxxVqFCk_arV6hBVYD_AGQRmWGzWZuT9L7Lu4fNBLgnrj5/s320/2012-01-08_12-03-38_331-1.jpg" width="320" /></a></div>
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<span style="font-size: large;">I also submitted this card for another drawing. I LOVE this sentiment...I try to find something to be thankful for everyday, so why not celebrate!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_LDaEccyYOmRwZQhUmCMlwWFzSe3Ytqyx2C2zBn2jTR6I4q2KBB4xg0k7yOUlB_kKLHCYjPuAFIGbmhUifZ5WUR-c0HmTuiW7XbWFIx0bn5MS8vkBEXGauFxDo_sl8QuWsmCn071dskfu/s1600/DSCN0296.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="230" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_LDaEccyYOmRwZQhUmCMlwWFzSe3Ytqyx2C2zBn2jTR6I4q2KBB4xg0k7yOUlB_kKLHCYjPuAFIGbmhUifZ5WUR-c0HmTuiW7XbWFIx0bn5MS8vkBEXGauFxDo_sl8QuWsmCn071dskfu/s400/DSCN0296.JPG" width="400" /></a></div>
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<span style="font-size: large;">My submission for February is about Love & Friendship.</span></div>
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<span style="font-size: large;">The pictures are of my sisters, my nieces and myself. The sentiment "A Friend Loves at All Times" is from proverbs. It was a free download from <a href="http://deesbbboutique.blogspot.com/">Dee's Bugaboo Boutique</a> , she is creates beautiful scripture word art to download every Tuesday.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgFS-eD1lbb-wiJBTyg0AW0gLm4WoeGfpTVLIgLr2jj0CszJnU68VQXpqCpDBw5mb2aXWxX4I492DaKHxJ4RuQV20IGRysv9wCaT7U7cN4J5DFxkYIR40nzJh0vhptBEQigRESM6HFHyZA/s1600/DSCN0297.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgFS-eD1lbb-wiJBTyg0AW0gLm4WoeGfpTVLIgLr2jj0CszJnU68VQXpqCpDBw5mb2aXWxX4I492DaKHxJ4RuQV20IGRysv9wCaT7U7cN4J5DFxkYIR40nzJh0vhptBEQigRESM6HFHyZA/s320/DSCN0297.JPG" width="284" /></a></div>
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<span style="font-size: large;">I'm not very big on Valentine's, but here is what else I entered into the drawing. I didn't win this month, but my sister Gae did!</span></div>
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<span style="font-size: large;">As always, thank you all for dropping by now and then.</span></div>Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com1tag:blogger.com,1999:blog-1916593292675307800.post-26207724964085541212011-11-15T14:27:00.001-05:002011-11-15T15:31:14.824-05:00My First Meeting and a Bit About Coraggio!<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">This past weekend I had the opportunity to attend my first Myasthenia Gravis chapter meeting. The NJ chapter holds about four to six meetings a year. They meet about an hour from my house, and since I can't drive as far as I used to without my arms and neck tiring, my sister acted as driver. We made a few references to "Driving Miss Daisy" and off we went!</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">I was very excited to finally meet other people who live with MG. MGer's as my friend Kerri calls us. I still don't know what most people prefer, I guess I'll learn as I go to more meetings! The people were warm, friendly, and gracious. Many shared their stories, they talked of daily struggles and ways to overcome obstacles they faced. The chapter has a lending library, you take a book home and mail it back to the librarian when you're finished. </span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">A guest speaker was also on the agenda. Her name was Lisa K. Gigliotti, J.D., an administrative law judge, a policy adviser for the Michigan State Senate and Governor, as well as an advocate for people with disabilities. Ms. Gigliotti is also an author and motivational speaker. She too lives with Myasthenia Gravis and Rheumatoid Arthritis.</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Her presentation was called "<i>Coraggio, Lessons for Living From an Italian Grandmother". </i>Lisa talks about how she overcame the disabling effects of Rheumatoid Arthritis and later Myasthenia Gravis. She shares stories about her family, and how she drew strength and coraggio (courage) from her grandmother after the death of her mother and aunt. </span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">I hope you get the chance to hear Lisa or read one of her books.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6CLsETr7u9u2SxIcskwgk65PaRCxpSF-BnZjakuuVe5eN-kmWUQwjB8Mt7Fceez-X5YtbjvkZ5hKTmm3-KC0Fftzqiw1v0Xen7SmPQUwiGUvyZSDSL6eWi9iJRG3wGMiiGvbSoqrAtYGN/s1600/front-193x300.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6CLsETr7u9u2SxIcskwgk65PaRCxpSF-BnZjakuuVe5eN-kmWUQwjB8Mt7Fceez-X5YtbjvkZ5hKTmm3-KC0Fftzqiw1v0Xen7SmPQUwiGUvyZSDSL6eWi9iJRG3wGMiiGvbSoqrAtYGN/s1600/front-193x300.png" /></a></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">To visit Lisa's blog, or watch her video visit:</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: large;"> <a href="http://withcourageican.com/">withcourageican.com</a></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOObmEJKMwPk5ILN2zFQraz4XNLCn6RWicZ0OTapkiyxBp9WUhvbywU74uEj9VmNYIBUQyge8OndiUx2akpvIpSwcGYc1dZov_9dALmkag6MM6g0gkwaVhSEDrXP388u4ciGA6alSPnuQb/s1600/IMG_20111113_105307.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOObmEJKMwPk5ILN2zFQraz4XNLCn6RWicZ0OTapkiyxBp9WUhvbywU74uEj9VmNYIBUQyge8OndiUx2akpvIpSwcGYc1dZov_9dALmkag6MM6g0gkwaVhSEDrXP388u4ciGA6alSPnuQb/s320/IMG_20111113_105307.jpg" width="320" /></a></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><i>Lisa, Thank you for showing us how to live with "<b>CORAGGIO!</b>"</i></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><br /></span></div>Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com3tag:blogger.com,1999:blog-1916593292675307800.post-995767916295089532011-11-11T15:21:00.001-05:002011-11-11T16:05:31.072-05:00The Yes We Can Van<div style="font-family: "Trebuchet MS",sans-serif; text-align: center;">
<span style="font-size: large;">I had the pleasure of meeting one of my newer Facebook friends yesterday. Her name is Carole Brown, she's originally from the UK, buts now calls the USA home.</span></div>
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<span style="font-size: large;">Carole is currently traveling across the United States in her "Yes We Can Van". It's a vintage 1970's VW camper van. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEI8Nx_hpwDD0EPANMNQhuEoC3vuYMnLRtnka5VxLE8ofejLKTh9KFax5hCqxMewU2P1FAjPo_MDcC2KVyrYG4Ev2Jc8IiCjrgKhbNmxV5DBDFZBtDvIMhb4GwDsyaNLBjBMvz0wvZKE5j/s1600/DSCN0288.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEI8Nx_hpwDD0EPANMNQhuEoC3vuYMnLRtnka5VxLE8ofejLKTh9KFax5hCqxMewU2P1FAjPo_MDcC2KVyrYG4Ev2Jc8IiCjrgKhbNmxV5DBDFZBtDvIMhb4GwDsyaNLBjBMvz0wvZKE5j/s400/DSCN0288.JPG" style="font-family: Verdana,sans-serif;" width="400" /> </a></div>
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<span style="font-size: large;"><span style="font-family: "Trebuchet MS",sans-serif;">The main purpose to raise awareness </span></span> <span style="font-size: large;"><span style="font-family: "Trebuchet MS",sans-serif;">about Myasthenia Gravis (MG). MG is a rare under diagnosed auto-immune neuro-muscular disease</span></span> <span style="font-size: large;"><span style="font-family: "Trebuchet MS",sans-serif;">that causes severe muscle weakness, currently there is no cure. Anyone can be affected by MG, it knows no age, race, or ethnicity. </span></span></div>
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<span style="font-size: large;"><span style="font-family: "Trebuchet MS",sans-serif;">Carole's mom lived with MG, it has become her life's mission to tell others what MG is and how it affects people's lives. She is currently traveling along the southern states en route to California. She plans to visit MG chapter meetings and visit with others whose lives have been affected by MG. </span></span></div>
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<span style="font-size: large;"><span style="font-family: "Trebuchet MS",sans-serif;">If you would like to follow Carole and her "Yes We Can" camper van or learn more about Myasthenia Gravis simply </span></span></div>
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<span style="font-size: large;"><span style="font-family: "Trebuchet MS",sans-serif;"> click on <a href="http://vw4causes.org/">this link.</a></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP2PuOHgV3iBs2ySbFEQrpeeyxO2fzNqLanrRZ2RmLAUggiGBWptPwvPGxiceua3BgaiolJARRNEmOKVDcQTigjnApVIEI5Lv53-8mkmpmzyWGQjnEWZ_lvYkeLHhNjCusTWF5b7NMbcPX/s1600/DSCN0289.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP2PuOHgV3iBs2ySbFEQrpeeyxO2fzNqLanrRZ2RmLAUggiGBWptPwvPGxiceua3BgaiolJARRNEmOKVDcQTigjnApVIEI5Lv53-8mkmpmzyWGQjnEWZ_lvYkeLHhNjCusTWF5b7NMbcPX/s320/DSCN0289.JPG" width="320" /></a></div>
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<span style="font-size: large;"><span style="font-family: "Trebuchet MS",sans-serif;"> Wishing you safe travels my friend!</span></span></div>
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</div>Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com3tag:blogger.com,1999:blog-1916593292675307800.post-77714962933776091952011-10-25T13:27:00.000-04:002011-10-25T13:27:50.436-04:00My Little Baker...<div style="text-align: justify;">
<span style="font-size: large;">Baking is one of my favorite things to do, especially when the weather starts to get cooler. There's nothing like the sweet smell of something yummy baking. It makes me feel all warm and happy inside. </span></div>
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<span style="font-size: large;">My youngest niece Haley also loves to bake. Although sometimes our ideas of "baking" aren't on the same page. We love baking from scratch, she on the other hand thinks placing a Pillsbury break and bake cookie on a tray is "baking". So this weekend we compromised, we baked from a cake mix. We always keep a few mixes and frosting on hand to use in a pinch. </span></div>
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<span style="font-size: large;">My little baker had decided she was going to bake cupcakes. There were all kinds of noises coming from the kitchen. I could hear doors and drawers being opened and closed, and the sound of metal as it crashed on the kitchen floor! I shook my head as I rose from my chair. I bravely walked to the kitchen, as I approached Haley looked at me and announced "we don't have any cupcake mix, I'll have to make brownies instead!" I explained that you use a cake mix to bake cupcakes, we didn't need a special mix. The look of happiness returned! On the kitchen table she had already gathered all of the things we would need. There were eggs, oil, a mixing bowl and whisk, and all sorts of measuring cups just waiting to be used. </span></div>
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<span style="font-size: large;">Haley informed me she didn't really need me to help, I could sit and watch...with great trepidation I took a seat at the kitchen table. With the skills of a master baker she carefully measured. She mixed and mixed until the batter looked just right. I poured the batter into a large measuring cup to make putting the batter into the cupcake pan easier. Chef Haley slowly poured the batter into each cup, licking her fingers every chance she could. With her approval I placed them in the oven. She set the timer and waited as patiently as an eight year old could. Their sweet aroma began to fill the kitchen. It would only be a matter of time before they would be ready.</span></div>
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<span style="font-size: large;">We placed the cupcakes on the rack, while they cooled Chef Haley gathered some frosting and sprinkles to decorate with. Each cupcake was carefully frosted and covered in Halloween sprinkles. Cleanup came next! After licking bowls and whisks Haley even did her own dishes...She was so proud of all her work, and so was I!!</span></div>
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<span style="font-size: large;"><br /></span></div>Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com4tag:blogger.com,1999:blog-1916593292675307800.post-83920971923081136272011-10-18T10:57:00.000-04:002011-10-18T10:57:04.758-04:00Six Years Ago...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzURhCXo9r_19RRvmeWrP3Bfm4fPYkkkQGO2UXdnvlffc18q_SQMjucf0ko_rwnDX7YYuUA2Z-Yl1rVWMbcYgHrhGW9CGv1QtStwBLeLWhus-yZt7pFnKL8FDIueCPg3QcTQ94_JKBYqcK/s1600/PD_0003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzURhCXo9r_19RRvmeWrP3Bfm4fPYkkkQGO2UXdnvlffc18q_SQMjucf0ko_rwnDX7YYuUA2Z-Yl1rVWMbcYgHrhGW9CGv1QtStwBLeLWhus-yZt7pFnKL8FDIueCPg3QcTQ94_JKBYqcK/s400/PD_0003.JPG" width="265" /></a></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">Six years ago today I lost someone, </span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">I lost a friend, a confidant, a mentor, I lost the most important person in my life, I lost my mother.</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">She was kind and gentle, or a force to be reckoned with!</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">I learned many of life's lessons from her...how to treat and respect others, to be true to myself, have faith in God, no matter what hand I was dealt, and to be responsible for my own actions. </span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">When we shopped she always bought extra food for those in need. The bag was always left on the back porch of the rectory without any fanfare. There was never a need for recognition. She prayed for those who were in need of God's blessings. She always looked after our elderly neighbors. She visited them, brought them meals and treats.</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">She worked as a nurse, sometimes caring for those forgotten by their families. She cared for the elderly, mentally and physically disabled, and for prison inmates. No matter what their affliction, they were cared for with kindness and compassion. </span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">Losing her has gotten easier over the years. But now and then a song will come on the radio, or I'll be cooking one of her favorites and I begin to cry. Sometimes out of sadness, other times, joy and happiness. I miss watching Jeopardy and crocheting with her, mother daughter vacations and lunches are now a pleasant memory. She is always in my thoughts, I talk to her daily. I find comfort in knowing she is resting in God's hands...</span></span></div>
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<i><span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">Harriet Grace</span></span></i></div>
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<i><span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">August 27, 1940-Ocotber 18, 2005 </span></span></i> </div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span><br />Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com4tag:blogger.com,1999:blog-1916593292675307800.post-83097144897524121912011-09-28T11:47:00.000-04:002011-09-28T11:48:28.482-04:00Anxiously Awaiting Autumn<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid8JJIlrYbYFoy4wRZdkYTuj821RiWPgr3l92KNHjzhEXmuE9F-LKgorVBLLFwbvnRM-SROtTi9T91gsPQaaQVAkzel5mdoEUZqJawU6ooX6WNeRLfp1JTKb4pIe11HDUT81XfSLIeeRl3/s1600/DSCN0652.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid8JJIlrYbYFoy4wRZdkYTuj821RiWPgr3l92KNHjzhEXmuE9F-LKgorVBLLFwbvnRM-SROtTi9T91gsPQaaQVAkzel5mdoEUZqJawU6ooX6WNeRLfp1JTKb4pIe11HDUT81XfSLIeeRl3/s400/DSCN0652.JPG" width="400" /></a></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"></span><span style="font-family: Arial,Helvetica,sans-serif;">Autumn is my favorite time of year</span></span>...<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: large;">I love the crisp chill in the evening air...the magnificent colors as the leaves change from brilliant green to warm browns, gold, oranges, & reds.</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: large;">The animals are busy preparing themselves for the winter ahead...the geese fly overhead on their way to their winter homes...squirrels are scampering about hiding nuts...</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: large;">Farm markets will soon open their corn mazes and have all kinds of family activities...Apples are ripe for the picking.</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: large;">My cooking and baking will change from quick and easy to slow and comforting...Soups, stews, casseroles..</span></span>.<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">Pumpkin Muffins...Apple Pie...Cranberry Nut Bread.</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">But what I love most of all are the changes my body experiences...The MG monster LOVES the heat and humidity that summer brings...for me it also LOVES "old man winter"...The MG monster is also a COWARD...he hides in the fall...My muscle's grow stronger as the days grow shorter...my steps become more sure...I can walk greater distances...I'm more productive at home...my body doesn't require hours of sleep after doing even the simplest tasks...</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2rC0jqVnW6_Zk1fmybmoXS8yIaZwqcw7jhghh1hDjk8BugymXhpQo74ToS4sD8dgNj_BljEac5HEwABSgjN4E_QVgVn2zdqigjJkYtgSX6ENAPxnJ0f-7KJrOiUd5SAbnLQVKOuoYshh6/s1600/DSCN0648.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2rC0jqVnW6_Zk1fmybmoXS8yIaZwqcw7jhghh1hDjk8BugymXhpQo74ToS4sD8dgNj_BljEac5HEwABSgjN4E_QVgVn2zdqigjJkYtgSX6ENAPxnJ0f-7KJrOiUd5SAbnLQVKOuoYshh6/s400/DSCN0648.JPG" width="400" /></a></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span><span style="font-size: x-large;"><span style="font-family: Georgia,"Times New Roman",serif;"><i>That's why autumn is my favorite season!!!</i></span></span></div>
Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com7tag:blogger.com,1999:blog-1916593292675307800.post-64510062230895160792011-07-30T12:17:00.000-04:002015-07-17T16:19:27.921-04:00Life is a Struggle...<div style="text-align: left;">
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">The last few weeks have been a struggle for me.</span></span></div>
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">My youngest sister passed away at 39 years old. Up until recently she lived with me, my other sister and their two daughters. Sadly she died alone, in her small apartment away from family and friends. As young children we shared many happy times. But as we got older she became more distant. </span><span style="font-family: Arial,Helvetica,sans-serif;">Our relationship was strained, I never gave up hope we would repair the damage that tore our family apart. Much to my regret it was not to be.</span></span></div>
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">She left behind a beautiful, loving daughter. She struggled with being a single parent. My sister and I were there to help, but it's not always enough. She survived kidney cancer, but struggled with substance abuse and mental health problems. There were times I felt so lost and helpless, she wouldn't let me help her, no matter what I tried to do. </span></span></div>
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">My niece has been living with my sister and I for quite some time. It broke my heart when I had to tell this sweet, loving angel that her mother passed away. I know she is struggling too, she keeps telling me how mad she is that I ruined her most perfect day. We decided to make a memory quilt together, we've started collecting fabric from some of her mom's clothes. One of her shirts had a beautiful poem about butterflies on it, this will be the center block. My niece is very excited about remembering her mom this way. </span></span></div>
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Life is full of struggles and hardships. Sometimes we overcome them, sometimes they get the best of us. Right now my daily struggle with Myasthenia Gravis seems very small when I compare it to the struggle of an eight year old coping with the death of her mother...</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif5KYBfrbZSEMIMqBLf-Ewut1uBa4WxCIpOlkB_C6ch-R32KCxFDA1HTjmVhBFSWY_Eyd5M8lBcjLTuRnJLpqojAT4m-LjwM0XEkaPa_Pt8cCPCLhN4lIPWTRZXQoyVIbQTx05WeJ-C62y/s1600/P1000715.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif5KYBfrbZSEMIMqBLf-Ewut1uBa4WxCIpOlkB_C6ch-R32KCxFDA1HTjmVhBFSWY_Eyd5M8lBcjLTuRnJLpqojAT4m-LjwM0XEkaPa_Pt8cCPCLhN4lIPWTRZXQoyVIbQTx05WeJ-C62y/s400/P1000715.JPG" width="400" /></a></div>
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">My sister is resting in heaven now, there are no more struggles for her.</span></span></div>
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<i style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: large;">Rest in Peace Nickie</span></i></div>
Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com7tag:blogger.com,1999:blog-1916593292675307800.post-15649571417842195702011-07-13T18:50:00.000-04:002011-07-13T18:50:25.785-04:00I'll Never Be Esther Williams Again...<div style="text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuUvxGl0Ok8shylUO_hDBhRUM5_DU8qCOt3xnKmtP2xtSCo3p79UAZrIiyqDVpzGLS12jYDaBiKx0wHTuAm7yxzxg00SagKgtUPMEDjtTa4h5xAf82JPK3Qnm62XINlM4_ThRmaXeHGlLs/s1600/Esther+Willaims.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuUvxGl0Ok8shylUO_hDBhRUM5_DU8qCOt3xnKmtP2xtSCo3p79UAZrIiyqDVpzGLS12jYDaBiKx0wHTuAm7yxzxg00SagKgtUPMEDjtTa4h5xAf82JPK3Qnm62XINlM4_ThRmaXeHGlLs/s400/Esther+Willaims.jpeg" width="400" /></a><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">The weather has been extremely hot and humid across most of the country the last few days. New Jersey is no exception! So to escape the heat my sister and I have been taking her girls to our town pool. It was remodeled a few years ago, it's a far cry better than it was when I was younger! We always had a pool in our backyard, but as we got older and my parents health got worse we finally removed it. I must admit, I miss it so much!</span></span></div><div style="text-align: left;"><br />
</div><div style="text-align: center;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: left;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">This will be my first official MG summer. I got sick in June of last year, but didn't officially become a member of the "MG Club" until the fall. I couldn't wait to get in the water and swim to my hearts content, water has always been so liberating for me. I love to swim laps to clear my head. There's is something so meditative about swimming, stroke after stroke you free your mind and relax your body. It gives you time to reflect and ponder things. </span></span></div><div style="text-align: left;"><br />
</div><div style="text-align: center;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: left;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">I went to the pool for the first time the other day. I felt so free in the water, almost like there was no muscle weakness at all. I floated along, looking at the clouds above my head as the cool water splashed around me</span></span>. <span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">I was the "OLD" me again, or so I thought! I decided to swim some laps, BIG mistake, I swam about 20 feet when I could feel my arms and legs weaken, my motions became slower, I could feel myself sinking under the water! While I was in no danger of drowning I stopped trying to swim laps. I didn't want to be the "fat lady" that the lifeguards had to save! So I went back to floating and gentle paddling about. I felt so cool and refreshed when I got out of the water. My body was tired but nowadays that's the norm. We went home, and as we went to prepare dinner I dumbstruck by how weak I felt. I could barely stand! My sister finished fixing dinner, and I spent the rest of the evening in my recliner. I dozed off, and eventually got up and went to bed to rest up from all my swimming fun!</span></span></div><div style="text-align: center;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"><br />
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</span></span></div><div style="text-align: left;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">I got up as usual to my morning medication alarm and took my first dose of Mestinon. Jumping out of bed first thing in the morning is never easy for me anymore, I kind of ease into it gradually. So as I put my feet on the floor to stand, I wasn't shocked when I had a morning case of spaghetti legs. Going about my morning I was getting more fatigued by the moment, I hadn't felt so weak in quite a while. I went back to bed to rest a little more. I was still exhausted when I got back up. It would take almost all day for me to feel up to par!</span></span></div><div style="text-align: center;"><br />
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</div><div style="text-align: left;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">Yesterday was a scorcher, it was in the mid 90's with high humidity. So off to the pool we went. Again I made an attempt at swimming some laps. Sadly the outcome was the same. I have a lot of limb girdle weakness, so climbing stairs and doing things that require a lot of shoulder movement are very difficult. So I guess laps are out of the question! I was resigned to floating and bobbing around, enjoying every minute of the cooling effects and my weary muscles.</span></span></div><div style="text-align: center;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"><br />
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</span></span></div><div style="text-align: left;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">Today I'm struggling with everything I need to do, my body is so tired and weak, I feel like a participated in a marathon! So here I am typing in my recliner reflecting on another change in my life. Myasthenia Gravis and fun in the pool don't make the best of friends! Just walking about in the pool against the weight of the water has left me almost immobile. Even my Mestinon is of little use today!</span></span></div><div style="text-align: left;"><br />
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</span></span></div><div style="text-align: left;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">I'm trying not to let this upset me, but I'm finding it rather difficult. My life doesn't depend on swimming laps in a town pool, but I was once again shocked back into my "NEW" reality. I will "NEVER" be Esther Williams again!"</span></span></div><div style="text-align: center;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"><br />
</span></span></div><div style="text-align: center;"><span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div>Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com5tag:blogger.com,1999:blog-1916593292675307800.post-55172991099254795242011-07-07T22:59:00.000-04:002015-07-17T16:18:15.768-04:00MG and Tootsie Rolls, An Adventure in Eating...<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">My house recently acquired a windfall of Tootsie Roll candies from the 4th of July parade. As the floats and various groups pass by they throw candy and other goodies at the spectators. My niece managed to collect almost a gallon freezer bag full of yummy goodness, including lots of original and flavored Tootsie Rolls and Tootsie Pops. She is NOT a Tootsie Roll eater, and began sharing her bounty with the rest of the family. I on the other hand LOVE Tootsie Rolls, so my share of the booty kept getting larger. </span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">Since being diagnosed with MG I've learned through trial and error what I can and can't eat. My neurologist warned me about hard dry things, chewy things, and even changing the way I eat or drink as the need arises. </span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">I don't chew gum anymore, it makes my jaw so weak I can hardly keep my mouth closed. I'm careful to make sure to chew well and take smaller bites. I love caramel candy of all kinds, but avoid them as much as possible. It's not very attractive looking when your totally enjoy that sinfully good chocolate covered caramel and drool is coming out the side of your mouth, so I save them for a special treat with others who don't mind if I drool!</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">I can't remember when I last ate a Tootsie Roll, so at my niece's urging we shared some candy together. Well what a mistake that turned out to be! I chewed, and chewed, and chewed. My jaw was becoming weaker and weaker with each chew. It was worse than chewing bubblegum. I never imagined I was going to have such trouble. I was afraid I was going to choke on the darn thing! It finally went down, I breathed a giant sigh of relief. Then in a sweet gentle voice my niece said "here Rachel, I know you love Tootsie Rolls" as she passed me another. I told her I had trouble chewing the first one and would save the others for another time. And spoken with the wisdom of an 8 year old she said " I could call 911 and CPR you if you choke" I couldn't help but smile and thank her, but saved the Tootsie Roll for another day when I felt like I needed some excitement.</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">So as a reminder,be careful what you eat. But most importantly have someone around who can call 911 in case you are foolish enough to choke on a Tootsie Roll!</span></span></div>
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Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com4tag:blogger.com,1999:blog-1916593292675307800.post-31367978127298316572011-07-05T20:35:00.000-04:002011-07-05T20:35:23.937-04:00"The Greatest Little Town in the Land" Celebrates July 4th....<div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">My little town LOVES to celebrate Independence Day! It's an all day event that takes a full year of planning by a handful of dedicated volunteers. They have contests to choose the Grand Marshall, and to decide the theme of the celebration. This years theme was "MILLTOWN ROCKS THE FOURTH OF JULY!" We play host to visitors from all over the county.</span></span></div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">The day starts at 6:00am with a Fishing Rodeo for the kids. Young anglers can be seen lining the Main St. bridge and a host of other prime fishing spots throughout town, all in the hopes of "Catching the Big One" and going down in Borough history until the next year.</span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Next comes a 5K race and Fun Run. Runners of all ages and abilities participate. The race starts off with a bang, literally! One of our residents has a cannon that is used to start the race. You can hear it from several blocks away! </span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><br />
</span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">One of my favorite parts of the day is the annual parade. People start placing their chairs and blankets along Main St. from early morning. It's funny when you look across the street or next to you, chances are the same people who are sitting near you sat there last year and the year before. It's almost like folks inherit their own little space for the parade from their ancestors. We've been sitting in the same spot for forty years!</span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><br />
</span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Our parade honors veterans and active duty members of all branches of service. My heart swells with pride when the flag is paraded past, some people salute, others remove their hats, and others cheer as "Old Glory" passes by!</span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYuMUgl3m3I3mwHDklY1ODJ9TG8detTN2s4TgJHewJ76EnSvgJiZRb70aP79UZkTvyqtLm8Ee7lQV1d7x_LyfqeyvulWqxFKnMvLB4SVbZ5FpGRdoFBdcXORlAERhGez9C1O5xoSkZ4JcU/s1600/P1000811.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYuMUgl3m3I3mwHDklY1ODJ9TG8detTN2s4TgJHewJ76EnSvgJiZRb70aP79UZkTvyqtLm8Ee7lQV1d7x_LyfqeyvulWqxFKnMvLB4SVbZ5FpGRdoFBdcXORlAERhGez9C1O5xoSkZ4JcU/s400/P1000811.JPG" width="400" /></a></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><br />
</span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span><span style="font-family: Arial,Helvetica,sans-serif;">Members of all the local organizations also march. We have Boy Scouts, Girl Scouts, members of the First Aid Squad and Fire Departments, dancing schools, church groups, and a host of other groups. But I must confess MY favorite part of the parade are the Bagpipes! I know they are not for everyone, but for me it wouldn't be a parade without them! I've ALWAYS had a secret desire to learn the pipes, maybe that will go on my "Bucket List"</span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbV31_yUWmiHoaSJdgNR1ZFDBiE3Vg9WQa7lay5dUMwSkNU6HcYDoSSmjQMtnvIv21njtUrNSEjn9ZX0SMKPj5PpFtrEUPTl8U7l8z4-jLVolOsrlMgp4_nNwtvsjbNC_m1-RBBq5zwu43/s1600/P1000813.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbV31_yUWmiHoaSJdgNR1ZFDBiE3Vg9WQa7lay5dUMwSkNU6HcYDoSSmjQMtnvIv21njtUrNSEjn9ZX0SMKPj5PpFtrEUPTl8U7l8z4-jLVolOsrlMgp4_nNwtvsjbNC_m1-RBBq5zwu43/s400/P1000813.JPG" width="400" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> And you can't forget "The Mummer's" the crowds go wild as they do their strut. The costumes are so wild and colorful, they never disappoint!</span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLyeVyy8ta52YDFvgfpsHBT7H6dvTV1AK-QtQKEyCdd-bTWg32abl_iVFuOjXXTonrf1GQ9V2tex4JuQr-_c50ZSsX5KXhD7PiA2w5G_eqhgmFv7NYNxXn796hENqDiEhlHpdIcdl7mqr5/s1600/P1000812.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLyeVyy8ta52YDFvgfpsHBT7H6dvTV1AK-QtQKEyCdd-bTWg32abl_iVFuOjXXTonrf1GQ9V2tex4JuQr-_c50ZSsX5KXhD7PiA2w5G_eqhgmFv7NYNxXn796hENqDiEhlHpdIcdl7mqr5/s400/P1000812.JPG" width="400" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">After the parade the crowds head to Borough Park for an afternoon of rides, and relay races. There are awards for floats, marching bands, and various civic organizations. All you can eat hot dogs and soda are served by the Fire Department. And various bands play into the night. Some folks return home to BBQ with family and friends, while others wait in anticipation of the fireworks spectacular to begin.</span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju_N3LVJAgWWgL_4SSrxuT-hZ5MiSAeHNl6iukt9F4uC5ejrPgsDAwLLCHiTF1O0UcHBI2kKd3VdZbt_nS7RE5pbWFOATujv9bR_jTsZntogRjxWOQ5-_47Ys_gisNHFiJ-7AdDXb_QG6k/s1600/P1000320.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju_N3LVJAgWWgL_4SSrxuT-hZ5MiSAeHNl6iukt9F4uC5ejrPgsDAwLLCHiTF1O0UcHBI2kKd3VdZbt_nS7RE5pbWFOATujv9bR_jTsZntogRjxWOQ5-_47Ys_gisNHFiJ-7AdDXb_QG6k/s400/P1000320.JPG" width="400" /></a></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: left;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: left;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: left;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: left;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: left;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: left;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"> </span></span></div><div style="text-align: left;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">The view from my backyard...</span></span></div><div style="text-align: left;"><br />
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</div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">As the day draws to a close it's important to remember why we really celebrate. It's not just a day for BBQ's, parades, relay races, and fishing derbies. It's a day to remind us of the struggle for freedom from religious persecution, and freedom from oppression. There are many who gave their lives to help form this country, and many who still fight today to aid others in enjoying the same freedoms we do.</span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #073763;"><b><span style="font-size: large;"><span style="font-family: Georgia,"Times New Roman",serif;">GOD BLESS AMERICA</span></span></b></span></span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #073763;"><b><span style="font-size: large;"><span style="font-family: Georgia,"Times New Roman",serif;">LAND OF THE FREE AND THE</span></span></b></span></span></span></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #073763;"><b><span style="font-size: large;"><span style="font-family: Georgia,"Times New Roman",serif;">HOME OF THE BRAVE </span></span></b></span> </span></span></div>Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com3tag:blogger.com,1999:blog-1916593292675307800.post-60305785555087883882011-06-26T16:19:00.000-04:002015-07-17T16:20:15.337-04:00The Trouble With Thistle...<div style="text-align: center;">
<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">I have to admit purple isn't exactly one of my favorite colors, but I can't resist the sight Thistle in full bloom. It's the national plant of Scotland. Legend has it that men carried it with them when they went into battle to remind them of their country and family left behind.</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">It grows tall and stately, but it's stem is covered with huge thorns. Butterflies and bees enjoy landing on the blossom to sip nectar. I don't know anyone who grows them in a flowerbed purposefully. They grow wild along the roads and highways. They make for a beautiful sight!</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">One day last spring I noticed a Thistle plant was growing up through the hedges in the front of my house. I couldn't have been happier. So I decided to let it grow, I was very careful when I trimmed so I didn't disturb the plant. I watched and waited as it grew taller and taller. It was almost six feet tall and full of blooms ready to burst any day. I couldn't wait, everyday I went out with my camera checking to see if the flowers had opened. And then it happened, so many of the flowers opened I couldn't wait to return home from running errands to take the perfect picture. While at the store the weather turned, a giant thunderstorm moved in, bringing severe gusting winds along with it. It was still pouring when I arrived home. I waited patiently for the storm to pass, it lasted several hours. When the storm moved out I grabbed my camera and headed out to the porch to get the shot I waited so long for. It was not to be, the blooms had been blown from there stems, the seeds being spread by the wind!</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">My front and back yards are now full of fledgling Thistle plants. There's even one growing at the site of the first plant. I will watch that one grow in hopes of capturing it in all it's splendor, maybe the weather will be on my side this year!</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;">Sometimes I think living life with MG is like being a Thistle plant. We try to grow tall and bloom for all to enjoy, but our thorns (Myasthenia Gravis) get in the way. We are strong, yet vulnerable to the wind and rain. We are planted firmly, our roots aren't easily destroyed. We live with the hopes of blooming another year in spite of whatever adversity comes our way, that's life with Myasthenia Gravis...</span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #134f5c;">June is Myasthenia Gravis</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #134f5c;">Awareness Month</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #134f5c;">to learn more visit:</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #134f5c;"><a href="http://myasthenia.org/">http://myasthenia.org</a> </span> </span></span></div>
Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com5tag:blogger.com,1999:blog-1916593292675307800.post-21397794869136372972011-06-23T17:25:00.000-04:002015-07-17T16:20:50.225-04:00How I Met The Monster.....Conclusion<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">A year ago this week my life would change forever</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Where we left off; As I said yesterday all my tests were coming back negative or with normal results. This only added to the stress and frustration I was feeling. I was at my wits end. I continued to pray, I prayed for the doctor's to discover what was wrong with me, I prayed for the strength to accept what would come my way, I prayed that my life would be spared. But I never bargained with God, it's not my way. I don't make promises for good things to come my way. It's always been my belief that if I led a good life I would be given the strength to live with whatever came my way.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">My doctors and neurologist were very busy reviewing all of the tests the had done and what they were considering next. I knew God was looking over my shoulder, I was starting to feel better. I was finally allowed out of bed after 4 days, but only to go to the toilet! After three and a half days things began to turn the corner. They thought they had found the problem. A wave of relief came over me! After reviewing all the labs and other test results the doctors discovered I had a seriously low Vitamin B12 level. I was caught by surprise, who would have thought that a low B12 level could cause so many problems. It turns out that Vit B12 is essential for your nerves and muscles to work properly</span></span>! <span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">I was started on a program to increase my B12 level, I would have to inject myself with the vitamin daily for several weeks, then weekly and then monthly, along with an oral supplement for the rest of my life. This was a whole lot better than a neuro-muscular disease. I offered a pray of thanks, again I had been blessed. Some other labs drawn, it was determined that I had an absorption problem. The doctor and neurologist said usually the neurological problems I was experiencing go away entirely. Some would take longer than others, some might never go away, only time would tell. It was agreed that I could go home after my B12 level increased. I was discharged two days later, feeling like a new person. I had to follow up with my doctor and neurologist in a few days. Any other testing could be done as an out-patient.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">My first visit with my doctor went pretty well, but there was some concern that I still had so much weakness in my arms and legs. I had to continue with the B12 regimen until I saw my neurologist a few days later. The next day I had another episode of almost paralyzing weakness. I was filled with fear all over again! I found comfort in the fact that I was going to see the neurologist in the morning. I had no idea what to expect form this visit. We talked at length about the B12 issue and the problems that it could cause, and then he said it "I want to test you for Myasthenia" my heart sank, I could feel the tears welling up in my eyes. I thought I had escaped a terrible fate. He was so kind and reassuring, he said "hopefully this is the last time we will ever have to talk about this." He wanted me to have Acetylcholine antibody tests drawn ASAP, an EMG was scheduled at his office for the next week. We would talk about the results then. I went to the lab on my way home. When I had the strength I searched the internet for anything I could about Myasthenia Gravis. I was now more afraid than before. I had no idea how bad this disease could be. When I look back now I think to myself, our family has never done anything small. Even with this I couldn't just have a droopy eyelid, no not me, I had to be almost paralyzed from weakness.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Now was I to become one of the many who struggled for years to get a diagnosis or would I be spared the same fate. Only time would tell. Off we went to for my next appointment, and guess what my antibody tests were NEGATIVE!! Dr. B. did my EMG, that was normal other than finding out I had Carpal Tunnel Syndrome. No surprise there, I spent much of my day on a computer at work and am an avid crocheter. Both are notorious for causing repetitive motion injuries. The next step would be to have the MuSk antibody test done. Because of the expense and nature of the test I would need prior authorization. It would take about four to six weeks for their decision. In the mean time we would see how much the B12 regimen helped the weakness. Then the letter arrived from my insurance company, as Gomer Pyle says "Surprise, Surprise, Surprise!" The insurance company didn't grant approval for the test, they didn't feel there was strong enough clinical evidence!! I was stunned to say the least, I couldn't call my neuro fast enough, he was floored. By now I was hysterical, he tried to reassure me, then the final blow came. He said with or without the test I would recommend the same thing. I want to start you on Mestinon. All I could think about were the horrible side effects I'd read about. I didn't want to pee myself or drool all over or whatever else could happen. I was not taking any medicine until I knew for sure that I had Myasthenia. So then off I went to Philadelphia for a Single Fiber EMG, and yes that was negative as well! I thought I was on the road to nowhere, everything was normal or negative, I was so discouraged at this point. God bless my neurologist he has the patience of a saint, he is such a kind soul. I know God was looking after me when that angel of a doctor came to my hospital room that first day. I was now a member of the sero-negative Myasthenia Gravis fraternity. A group I really didn't want to join, but here I am. I began Mestinon at 30 mg 3x daily. No side effects, thank you God! It helped some, but not enough, the dose was increased to 60mg 4x daily. It helps so much, I don't want to think about what my life would be like without it! My only regret is that I didn't take the Mestinon when the doctor first suggested it. As I've come to learn, there is no sure thing with MG ALL your tests can be negative and you can STILL have MG. I am so blessed that I didn't have to wait years for a diagnosis. My neurologist has treated many sero-negative patients in his career. Thank you God for sending an angel my way!</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #134f5c;"><b>June is Myasthenia Gravis Awareness Month</b></span></span></span><br />
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #134f5c;"><b>to learn more visit:</b></span></span></span><br />
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #134f5c;"><b><a href="http://myasthenia.org/">http://myasthenia.org</a> </b></span><br />
<span style="color: #134f5c;"><u><i><b></b></i></u></span></span></span>Rachel http://www.blogger.com/profile/14572451529799829878noreply@blogger.com4