tag:blogger.com,1999:blog-63241267254852840422024-03-05T23:47:41.298-08:00The Pasini ReportSharing my journey from caring for my terminally ill husband to learning how to live life "After Bob"
Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-6324126725485284042.post-4222085912075401032014-12-26T22:50:00.001-08:002014-12-26T22:52:00.783-08:00A very Different Christmas<dir><dir><dir><dir><dir><div align="CENTER">
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The holidays have always been my favorite time of the year. I love the crisp air, the first snowfall and all the hustle and bustle of family and friends. The songs and the pageants, the concerts and the parties the Holy hush that comes over the sanctuary as we remember Christ’s birth.<br />
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It’s a time in our lives where some of our favorite memories reside. It starts with our almost unbearable anticipation as children and gradually changes as we grow and add new members to our families. We start new traditions and argue about old ones. As time goes on it both changes and stays the same. <br />
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Last year Bob and I decided to stay at home and not travel to a family house party. We felt that it Was not safe to travel and the demands of his care made staying elsewhere very difficult. We are glad we did. We had a very laid back day. We stayed in our pajamas and ate everything that wasn’t good for us. We watched movies, and texted some friends who were watching the same movies at their house. We skyped family and showed each other our new Doglettes - nothing funnier than seeing some poor dog being held up to the webcam. We waited with huge anticipation for the Holiday 50<sup>th</sup> anniversary episode of Dr. Who and went to bed early.<br />
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It had been hard to make that call, because we were saying not just no to coming for that Christmas, but that as far as we knew we had to create a new Christmas normal. Traveling in the winter was no longer an option. Fortunately the year before we had a wonderful family celebration and now we could look forward to creating new ways to celebrate. We enjoyed that Christmas very much. Bob and I have always enjoyed each other’s company and it was a lovely day with just the two of us.<br />
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And once again it is time to create a new set of Christmas and holiday traditions.<br />
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On May 5, 2014 God took Bob home</div>
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Recently I attended a seminar on how to cope during the Holidays after the loss of a loved one and I came away with a few thoughts. Most importantly about how this season is <b><u>the</u></b> season for Hope and Joy and especially in the light of Bob’s going home this year.<br />
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Because God sent His Son Jesus to earth as a little babe who grew and lived just like us for 33 years before taking upon himself the burdens of our sin and carrying them to the cross to pay the price we couldn’t pay. Because he conquered death and rose again, we are reconciled to God and look forward to spending eternity with him in a new heaven and a new earth. A new home where there is no more pain, no more sorrow and no more death.<br />
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Because of Christmas and what it means to us, Bob is not “Lost” to us. He is home with God and waiting for us to join him. <br />
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So I have Joy that he is no longer in pain. In fact he is probably running around looking at everything, taking stuff apart and asking a gazillion questions. “Just out of curiosity….” was a favorite phrase of his. I have the Hope of being ushered into God’s presence someday and Bob will be right there ready to greet me.<br />
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So I will spend this holiday adjusting to new ways of celebrating, looking over precious memories and embracing the Hope and Joy of the season and being grateful for all it stands for. <br />
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May you all be embraced by the Magic of this season, look forward with Hope to the future, have many reasons to be Thankful and have a Joyous Holiday. <br />
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Love,<br />
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Susan & Suzette </span><br /></span><br /></span><br />Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com2tag:blogger.com,1999:blog-6324126725485284042.post-25087825073791645222014-06-10T19:34:00.001-07:002014-06-10T19:53:51.749-07:00Out on the Balcony<div class="separator" style="clear: both; text-align: center;">
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In the last month many have asked me "What are your plans?" And the most simplistic answer is that I do not have any. But the truth is a little more complex than that. What I am going to do is, not make any major changes, to learn how to live on my own, take time to heal physically, emotionally, and thru study of the word, prayer and seek his presence and will in my life.<br />
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I call it spending time out on the balcony. I got the call to do this last October at the Women's retreat. God clearly told me I needed to "Go back to the Balcony". This phrase has a particular meaning for me, let me explain.<br />
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When Bob first became sick with the Adrenal gland tumor we lived in a second story apartment that had the most wonderful balcony you could imagine. Our building was one of several that surrounded a huge open green space and we had so many trees growing around our balcony that you could just imagine that you were out in the wilderness. I spent a whole summer out there reading the word and seeking God. <br />
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Our whole life was changing and we didn't know what we should do. Bob was sick, My job was in limbo, all of my family had moved out of Spokane. What should we do? The most natural thing for us would have been to pack up and moved to Portland with the rest of the family. But through that summer of prayer and seeking We were told to stay.<br />
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Because of that summer on the balcony I learned to hear His voice and obey. Because I obeyed, all the mighty wonders that have been chronicled in this Blog occurred. So when I heard him say "Go back to the Balcony" I knew it was time to renew my study in the word and to seek His presence with the single mindedness of that summer. <br />
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I tried to start doing that right away, I sort of thought he was talking about getting prepared for loosing Bob. I have learned that there really is no getting prepared for that and Bob's needs made it almost impossible to have an extended daily quiet time with God. Thankfully through the years I have continued to study and pray and I believe those years sustained me as I tried to catch a moment with God every time I could. He carried me, I know this because that's what friends do when you need help. I have a relationship with Him that allowed me to lean on Him and let Him minister to me while I ministered to Bob.<br />
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The first week of life after Bob was taken up with getting ready for his memorial service and going down to California to bury him. During that week God's command became clear. Now was the time he was talking about. When I came back from California, He wanted me to "Go back to the Balcony." So with clarity I spoke to Mark the owner/ boss man and we agreed that I would be staying on when I came back.<br />
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My family would love nothing more than to have packed me up and moved me to Portland. But that's not what God want's me to do. He wants me to stay put, spend time in His word and seek Him in prayer. He wants me to rest and heal and grow closer to Him so that when He speaks to me and tells me what His plans are for me, I'll be ready, I'll hear His voice clearly.<br />
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I know He has plans for me, during one of my bible study's He told me so and if I wasn't clear on that I could always refer to the scripture. <br />
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<span class="text Jer-29-11" id="en-NIV-19647"><em><strong><sup class="versenum">"</sup>For I know the plans<sup class="crossreference" value="(<a href="#cen-NIV-19647A" title="See cross-reference A">A</a>)"></sup> I have for you,” declares the <span class="small-caps" style="font-variant: small-caps;">Lord</span>, “plans to prosper<sup class="crossreference" value="(<a href="#cen-NIV-19647B" title="See cross-reference B">B</a>)"></sup> you and not to harm you, plans to give you hope and a future."</strong></em></span></div>
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<span class="text Jer-29-11"><em><strong>Jeremiah 29:11</strong></em></span></div>
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<span class="text Jer-29-11">So If you want to know what my plans are. I am staying here in Spokane surrounded by an amazing community of friends and believers. I am staying on at the Mini-storage and I am "Going back to the Balcony" to wait on God.</span></div>
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Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com1tag:blogger.com,1999:blog-6324126725485284042.post-50206375772719894632014-05-19T12:27:00.002-07:002014-05-19T12:27:31.914-07:00Time to say GoodbyeI'm not saying goodbye to this blog. I believe that I still have a lot to say and share. However....<br />
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<tr><td class="tr-caption" style="text-align: center;">Robert Peter Pasini - Sept 20,1945 - May 5, 2014</td></tr>
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Robert Peter Pasini passed away on Monday May 5th, 2014 and has been freed from the torment of a decaying body that had trapped the most amazing man and husband.<br />
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This notice was delayed due to all the chaos of the last two weeks. We had family arriving, a memorial in Spokane and then we traveled down to Calif to bury him. If I have not contacted you prior to this I appologize. There was a point where there was just too much to do or more than I could cope with and I just had to let go and catch up later. There are those here that read this blog and I want you to know you are no less precious to me, so please forgive me.<br />
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I am doing as well as can be expected. I have been surrounded by family. Sunday they released me to my new normal and watched me climb into my van with a trailer full of our original furniture to take back to Spokane with me. I was a little cautious. Even though I had pulled a 33 foot sailboat behind our truck years ago it was the first time I was on my own. This will be the first time I have ever lived on my own, I think I can do this and I have a trusty sidekick named Suzette to hug and lick my elbow when I get lonely or sad.<br />
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Suzette and I arrived home safely and we have gone about our business settling in to this new life shedding tears now and again. He was my best friend and partner in crime. He leaves a huge hole in my world, but while he was here he filled it with Joy, Laughter, Adventure, Courage and Hope.<br />
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He made a date with me. He told me that when I arrive in Eternity that I was to find the Sheep Gate in the New Jerusalem, he would be waiting for me there. I believe that he will.<br />
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Through out all of this God has been amazing. As Bob was going to the hospital He told me I could trusted Him with Bob's life, both in the here and now and in his life to come in Eternity. As I crossed the border into Washington he greeted me with a rainbow - I sobbed buckets. Then when I was crossing the Spokane County line I was greeted with a double rainbow. My God has made a promise, he will always be with me and I can and will navigate this new path I am on.<br />
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For now it's time to say goodbye. Farewell my love - Fair winds and a following sea.<br />
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<br />Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com1tag:blogger.com,1999:blog-6324126725485284042.post-80277704736850632672014-04-20T21:05:00.001-07:002014-04-20T21:05:16.505-07:00Clap your Hands!Happy Resurrection Sunday! We were reminded all week what an amazing <br />God we have and what he did for us, starting with Palm Sunday. On Friday my Brother Flew in from Calif and went to Good Friday services with us. Had an absolutely wonderful time visiting with him. He and Bob had wonderful chats and he shared with Bob the impact he had on him when he was a young man in his twenties. He then flew to Portland to be with our folks.<br />
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Then on to Sunday and celebrating that we serve a LIVING God! Our women's bible study was made whole when two of our members returned from being gone for a while. We were able to love them and hug them. One- Tina has been battling cancer and the other- Kathy- her husband, Larry, went home to Jesus Saturday. While our hearts were heavy with the trials these two women have been enduring we could rejoice in their return to our class so that we could love, support and encourage them in person.<br />
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So even though our Sunday afternoon was a matter of going home and taking long naps, we did have a meaningful and complete Easter celebration even though it looked different from other years filled with family, big dinners, Easter eggs and kids. This disease may have changed our lives drastically but we refuse to let it suck the Joy from our lives.<br />
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In our class we are working thru the Psalms and this week was Psalm 47.<br />
It is an amazing joyful Psalm - "Clap your Hands and Shout!!!" kind of Psalm. It is believed that it was written during the reign of Hezekiah when the Israelites were being threatened by the King of Assyria. Up to this point the Assyrians were batting a 1000 with no losses. They are so sure of themselves they taunt the Hebrews saying "Who do you put your confidence in?"<br />
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So in the most devastating times of my life who do I put my trust, my confidence in? I know that this has been tested thoroughly this last year. Especially as Bob has been in the hospital at least four times since March 2013. I must confess that there have been times when I have hung onto my hope and trust in God by my fingernails as I dangled off the cliff. <br />
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He's always there, it's just that I can begin to panic and I'm hanging off the cliff for no other reason than I was running and not looking where I was going, so as I hang there I remember who my God is. He is alive! He is terrifyingly awesome and he has my back. As Beth Moore says He is HUGE! What are my problems compared to who my God is???<br />
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So when the Assyrians in my life ask me "Say to Hezekiah (read Susan), thus says the King of Assyria (read - my challenges and tribulations in my life): What reason for confidence is this in which you trust?" Isaiah 36:4<br />
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I reply - "O Clap your hands, all you peoples! Shout to God with the voice of triumph and sing songs of Joy! For the Lord Most High excites terror, awe and dread; He is a great king over all of the earth. He subdues peoples under us, and nations under our feet." Psalm 47:1-3<br />
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One more thing - Beth Moore writes this in her :Believing God" bible study<br />
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<em>The God of Abraham, Isaac, Jacob, Moses, Joshua, Gideon, Samson, David, John the Baptist, Mary of Magdala, Mary of Bethany, Peter, James, John and Paul <u><strong>Is Your God!</strong></u></em><br />
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<em>He is the <u><strong>Same-</strong></u> Yesterday, Today, Tomorrow and Forever!</em><br />
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<em>A God so <strong>Holy, Powerful and Present</strong> that He revealed Himself to Ezekiel and John and they both dropped like dead men.</em><br />
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<em>He is - The Magnificent One, Full of Splendor, Beautiful beyond comprehension. The <strong>I AM</strong> through out every generation.</em><br />
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<em>Whenever you have no idea what to believeHim for, Believe Him to be <strong>HUGE!</strong></em><br />
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<em><strong>Come Holy God and be Thy self!</strong></em><br />
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So life has changed and it isn't always the Hallmark Special experience. But We will find Joy, Fulfillment and Contentment in all things. I find that my thanksgiving in the middle of terrible events is more sincere, heartfelt and satisfying than when I express gratitude when things are going great. But as always I am reminded to "...be content in whatever state I am." Phil 4:11<br />
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So I hope that you all had a wonderful and meaningful Easter Weekend.<br />
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He is Risen!<br />
He is Risen Indeed!<br />
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Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com1tag:blogger.com,1999:blog-6324126725485284042.post-25779035674633382522013-12-27T17:47:00.000-08:002013-12-27T17:47:31.760-08:00Reality VS Superwoman (Reality wins)<div style="text-align: center;">
I'm not superwoman, even though I think I am. </div>
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I am becoming a wiser woman.</div>
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I thought that just because I was a resident manager and worked from home all day, that because the "Work" is really minimal, that I could take care of the job, Bob, the home and in my spare time sew and quilt. And for a while this was how things went. Lots of quilting and sewing and reading, I even sometimes got bored.</div>
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But little by little it changed. Slowly Bob's care has started to take more and more time, and I have less and less time to do - oh say laundry until it becomes critical. </div>
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So I think </div>
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Well you just have to organize your time better</div>
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So I got up earlier</div>
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And he started needing me earlier</div>
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And the laundry still didn't get done</div>
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or the sewing</div>
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or the quilting.</div>
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I still read</div>
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There's always time to read (especially if you are addicted)</div>
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But then that made me feel guilty. If I had time to read and putz around on the internet then I had time to do laundry, study my bible, quilt or sew. So I gave myself a very good talking to. Buck up Chickie Babe, you have been known to start in the bathroom and work your way all the way down to the laundry room in one day (usually the day before the Mother in Love shows up). But it isn't working. Oh, I might get the upper floor done, or the office or the laundry room but never all of them at the same time, not even the same week. </div>
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And Bob keeps asking me to do certain projects</div>
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Like start the Mustang</div>
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or fetch the batteries from the scooter and bring them inside </div>
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rebuild his Speakers</div>
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rewire his amp something</div>
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paint his toes</div>
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or manicure his fingers</div>
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The list goes on</div>
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and it doesn't get done</div>
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He did get his helicopter fixed, one of the respite guys (I should give them a name when I have time) helped him. One of them is going to help wire the amp thingy next time he comes to visit. I just have to remember where the parts are. </div>
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One night I came home after a respite evening and the guy had wiped out my fridge. No, he left the food in it, but he took a sponge and cleaned it. I was so embarrassed. It wasn't that it was embarrassingly dirty, It just had the usual issues that most well loved fridges have between major clean outs. But- someone other than me did it, what must he have thought of me? Another one cleaned the microwave. AWWGGGHHHH! I am a total failure of a stay at home housewife, I'll have to turn in my badge.</div>
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So again I start to think</div>
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Why is this so hard?</div>
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It didn't used to be?</div>
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And as I thought about it I realized that more and more of my time and energy is spent on Bob. In the morning it takes about 2 hours to get him up for the day. And just when I get him settled in his chair he thinks that then is the time he can start going down the list of the things that are on his agenda. By that time I don't want to do anything else Bob related for 10mins, I say 10mins but I probably really mean for the rest of the morning if there is any left of it. By that time I am finding it hard to breathe and if I don't get a break I'm going to be a really nasty person. Let's face it 2 hours of constant tending to another person is like water dripping in your face, and if you don't do something you will drown.</div>
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So I have to own it</div>
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I am not Superwoman</div>
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I need to get over perfection</div>
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I need help</div>
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And then another one of the guys - The Bob Guys (how's that sound?) starts coming before church to get him loaded up. When we got to church they (more Bob Guys) take my keys and shoo me off to worship, they take over my husband and my car. I don't even know where they parked it because after church they brought it around and loaded Bob up. And today one of them came, took the van, washed, cleaned and vacuumed it. As I was thanking him he said "It was a small thing and you have bigger things to worry about. Any time you need something just let us know."</div>
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Well there is one thing</div>
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It's aTradition</div>
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A Tradition that has had me worried</div>
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The Women in my family will laugh - they know</div>
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My mother is Scottish and they have a tradition that whatever state your home is in when the New Year rings in, that's it's highest potential the rest of the year. All my life from Christmas to New Year's we have spent scrubbing the house. I'm talking walls, ceilings, behind the fridge and stove EVERYTHING! This has filtered down to my sister and I and even my two nieces. That's right I am absolutely sure Tamara scrubbed her flat in London before she went to spend her holiday in Dublin with her sister, and right now they are probably cleaning Jocelyn's apartment. Or thinking about it, it's still early, at some point it will start happening and they won't realize what they are doing until they look at each other and start to laugh. It's the curse of having a Scottish grandmother.</div>
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So I ask</div>
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Do you know of a young woman who wouldn't mind cleaning a house during her vacation?</div>
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I tell him about the Tradition</div>
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Is that a Superstition?</div>
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No, a Tradition</div>
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A Tradition cloaked as a superstition handed down by our mother's to make sure we clean our houses at least once a year. </div>
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So Reality has won, I concede that I am no Superwoman (if I ever was) and I need to start arranging for help, to keep on top of the things that need to be done, to free myself up to be more available to Bob, to find time for me to quilt or sew or read. It's not a bad thing to let others in, to tell them what you need. It's just a hard thing. To accept it in yourself, that you can't do it all and THEN have to go and confess it to someone else, and THEN ask for help. But God is prompting me, changing my heart and mind.</div>
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First I had to learn to rely on Him, now He is showing me how to rely on others. I am not a burden, I am being supported by my fellow brothers and sisters in Christ. I am being used by God to bless these brothers and sisters. So many have told me how it blesses them to help us, to get to know Bob better. They listen to Bob talk about God and his faith, and now he is being blessed by them as they serve him and he opens up to them about the things he struggles with. They encourage him and support him in prayer. Today we are so used to the saying "It's a Viscous Circle" but we are experiencing the opposite "It's a Positive Circle".</div>
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So maybe it isn't Reality that has won, but God's people. We are winning, God is winning in our lives by transforming us into the people He wants us to be, to be reflections of Him and His love. </div>
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If that's the case then</div>
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I Surrender</div>
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Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com5tag:blogger.com,1999:blog-6324126725485284042.post-34492894133342024512013-11-24T10:18:00.000-08:002013-11-24T10:18:30.498-08:00Master Barista and new family members<span style="font-size: large;">Short and sweet today. It's been an eventful summer with two hospital stays, procedures, a trip, new wheels and new family members. I'm going to try to just tell the story in pictures</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj9t0xXpvDjb_vfw9nta5HF893MJmebN7yf64zf79De0RdKW9ZXFiGu7HQoQjiIa5gvCntN9BTkK5HRExIbIiiLvTxd7kYRxk_hIfJ3jkvh2oiJYmM110bpOysfasbTGGRJDE_B-TVKhVj/s200/1470352_772019501305_1891341449_n.jpg" style="margin-left: auto; margin-right: auto;" width="200" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Great Grandparents </span></td></tr>
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<span style="font-size: large;">Bob's Two nieces had their first babies just months apart this summer</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim_gR5AD768GlUEeFa_LpAiCfoj19M-BFDStt3LHI4Sshv-mBtlSj9_SaOXxb5oG8p5QQZLuWnUn71pm_0NqVUn6h5NNlWaA8S8F5YfFL95If2YME05ZOqN8M2Ptmjj6yfOheH8qRgU_qv/s1600/44819_1463120296613_1405564_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim_gR5AD768GlUEeFa_LpAiCfoj19M-BFDStt3LHI4Sshv-mBtlSj9_SaOXxb5oG8p5QQZLuWnUn71pm_0NqVUn6h5NNlWaA8S8F5YfFL95If2YME05ZOqN8M2Ptmjj6yfOheH8qRgU_qv/s320/44819_1463120296613_1405564_n.jpg" width="320" /></span></a></div>
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<span style="font-size: large;"> </span></div>
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<span style="font-size: large;">Our Fur babies Marlin and Spike lived to the ripe old ages of 18 & 19 - we miss them terribly</span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUVvJtY8n8IJScyDVtcVMmRZnow4ng9TJ122T-PW4E92vynfyJk5xAfCSR6d8Q1wswS46fwJ2bSXr_q_QlOvg95LuYQelDrKgwL4hVdlxWiLmiYOI4ifKyl7nc3DRe-Lj9syeD-VZTgUNf/s1600/103.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUVvJtY8n8IJScyDVtcVMmRZnow4ng9TJ122T-PW4E92vynfyJk5xAfCSR6d8Q1wswS46fwJ2bSXr_q_QlOvg95LuYQelDrKgwL4hVdlxWiLmiYOI4ifKyl7nc3DRe-Lj9syeD-VZTgUNf/s200/103.JPG" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWSnDnFmVOkhbursuLwTcCV7rBQ9wcASmAeX41PUB5ajR1G6whVGBOrc6VQagM8zFKxl5Raq3Fbg9zWA7o9WRy-EANn-iC8S86Z5b4soyzMqVRztoKUyaX7KqLa6WTWi3Qv68BXIybJGko/s1600/561613_10201788688617545_676338914_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWSnDnFmVOkhbursuLwTcCV7rBQ9wcASmAeX41PUB5ajR1G6whVGBOrc6VQagM8zFKxl5Raq3Fbg9zWA7o9WRy-EANn-iC8S86Z5b4soyzMqVRztoKUyaX7KqLa6WTWi3Qv68BXIybJGko/s320/561613_10201788688617545_676338914_n.jpg" width="320" /></span></a></div>
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<span style="font-size: large;">Bob and I added Miss "Kootenay Snow Suzette" to our household</span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi21zUDKjkYa07VueilPA2d5WsEdP8x99aQPIbS3wpwXM3kA49-mGSYTGT7gPZtN12xd7Vp9B0kXyEWIxvS1RfVAMg8srQAoNf5jaHOKjFyq2Kl2P-vFARXJqccf3apyP99YHrU_HBHsCp1/s1600/PTB1A.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi21zUDKjkYa07VueilPA2d5WsEdP8x99aQPIbS3wpwXM3kA49-mGSYTGT7gPZtN12xd7Vp9B0kXyEWIxvS1RfVAMg8srQAoNf5jaHOKjFyq2Kl2P-vFARXJqccf3apyP99YHrU_HBHsCp1/s200/PTB1A.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Packed up for our annual trip to the Port Townsend Wooden Boat Festival</span></td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgypE1o8gf0WXTUZOtuKhS5a6PBrck7wMQ6kutz3GaUcxFn-hm-PCMfxUAgXqiHy_-7hZbPPemoDQKQb9X4Swkjt2sJ3ZDwRuxvphPR1PRzOJArLHr1J4WkX9FwZPnwC-x29QWPMsKeNJx/s1600/PTB46.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgypE1o8gf0WXTUZOtuKhS5a6PBrck7wMQ6kutz3GaUcxFn-hm-PCMfxUAgXqiHy_-7hZbPPemoDQKQb9X4Swkjt2sJ3ZDwRuxvphPR1PRzOJArLHr1J4WkX9FwZPnwC-x29QWPMsKeNJx/s200/PTB46.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Trudy and her husband Jeff are our travel buddies that make this trip possible</span></td></tr>
</tbody></table>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCOK1v_x5wdiqqsDnR7vjE6KpjNIB7Q8cFEhzXuITQdnlerIVzL4uuE1wCdf95_aXThChOUOCNwowRayfsz8SDPVuh08Z_rbFUs7y-_Ut4f_gGb1uaMgbKZiywk3tJT33ojxdRVLT3DMEr/s1600/DSCN2373.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCOK1v_x5wdiqqsDnR7vjE6KpjNIB7Q8cFEhzXuITQdnlerIVzL4uuE1wCdf95_aXThChOUOCNwowRayfsz8SDPVuh08Z_rbFUs7y-_Ut4f_gGb1uaMgbKZiywk3tJT33ojxdRVLT3DMEr/s200/DSCN2373.JPG" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7hg1MWPVidTwashvODnYOfPmNIQ8He3yQqUu2xJGSBWqRffQiBYRYDXG6IIAafWN8FLpWm3sFjineWbVxF0ssUc8JRMD3JeYKGQt0Syg5Ce1qlEU91aviBXIPoDfhlJn_CObWY5tMuQpw/s1600/PTB41.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7hg1MWPVidTwashvODnYOfPmNIQ8He3yQqUu2xJGSBWqRffQiBYRYDXG6IIAafWN8FLpWm3sFjineWbVxF0ssUc8JRMD3JeYKGQt0Syg5Ce1qlEU91aviBXIPoDfhlJn_CObWY5tMuQpw/s200/PTB41.JPG" width="200" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilUwVgUW3SHCzeNnsSJG2bjY10P5CJe5N_4wrghmGR8D5P64qgdK9i9r3cE4jNcXr1JU2LwehPNfuiY5d3Dh_lUH38tQh-gMqAbXq40fpv4af8bSbuI5o-exM0TWLrOy3pEGr2UaR-FlVc/s1600/PTB3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilUwVgUW3SHCzeNnsSJG2bjY10P5CJe5N_4wrghmGR8D5P64qgdK9i9r3cE4jNcXr1JU2LwehPNfuiY5d3Dh_lUH38tQh-gMqAbXq40fpv4af8bSbuI5o-exM0TWLrOy3pEGr2UaR-FlVc/s200/PTB3.JPG" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCmQOD3uFG3gNmziwDF2o3HxfP7AVwsZ4v8Zj__f-0jmCnyEU3lNVCdRcrds6EizAa_f7jsQayqV6vkjtNhHDcUPpYTPzcpPut__T1J4qu8BFFwdZ9xMwN2NpEvWbV4L3NZxS9NcxY9RZM/s1600/PTB21.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCmQOD3uFG3gNmziwDF2o3HxfP7AVwsZ4v8Zj__f-0jmCnyEU3lNVCdRcrds6EizAa_f7jsQayqV6vkjtNhHDcUPpYTPzcpPut__T1J4qu8BFFwdZ9xMwN2NpEvWbV4L3NZxS9NcxY9RZM/s200/PTB21.JPG" width="200" /></a><br />
<div style="text-align: center;">
<span style="font-size: large;">We found Amazing and Unusual accommodations for the trip</span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjLq4tYbwv_lEYwkJ6Xy0Ot_3iFRI75bXbttTnbS4h7RBtZ2kSr9bx030YDSurQ8nnoQRDtZxt8mCvqAYC0qmdT_uJ-8qEtAUdH4UAuzZZU7egdxJPiT471epSMH6gIooC3iWndRAwyygB/s1600/1380089_10201788689737573_1864323110_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="292" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjLq4tYbwv_lEYwkJ6Xy0Ot_3iFRI75bXbttTnbS4h7RBtZ2kSr9bx030YDSurQ8nnoQRDtZxt8mCvqAYC0qmdT_uJ-8qEtAUdH4UAuzZZU7egdxJPiT471epSMH6gIooC3iWndRAwyygB/s320/1380089_10201788689737573_1864323110_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Unfortunately Bob's body had difficulty being in the scooter all weekend. His Neurologist put him in the hospital for four days to ward off a UTI and low BP and ordered a new tilting and reclining wheelchair</span><br />
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</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3Jhkew6ktdttjial97yCKrHurzBA5PgzW0E-6BOSmosKlFccU5LND24DIJAyYIqi-BFca3OFWQ2WVefV8LIIj9JyCwP1roLXugF_2aQ3xG17YSEss59745c6JlwSAreFwi2ES1LP8ypYi/s1600/084.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3Jhkew6ktdttjial97yCKrHurzBA5PgzW0E-6BOSmosKlFccU5LND24DIJAyYIqi-BFca3OFWQ2WVefV8LIIj9JyCwP1roLXugF_2aQ3xG17YSEss59745c6JlwSAreFwi2ES1LP8ypYi/s320/084.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">We received the chair in less than 6 weeks</span></td></tr>
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<span style="font-size: large;"> And he was able to use the freedom it affords him to make Lattes</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYT7kTaD9BlkMYbY0K7-_xO31lTaiQdeuA9oItqbVhtAIO3apseu2P_UbZe6rxDP-JZC8lXjXO1V6TL7s2GTcs468oRjX-imbbGFhj1kIdXbsuJ5qXu1DhGCJnuTwaj-74t0DbCmjRLNmQ/s1600/969249_10201235024976300_859103140_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYT7kTaD9BlkMYbY0K7-_xO31lTaiQdeuA9oItqbVhtAIO3apseu2P_UbZe6rxDP-JZC8lXjXO1V6TL7s2GTcs468oRjX-imbbGFhj1kIdXbsuJ5qXu1DhGCJnuTwaj-74t0DbCmjRLNmQ/s200/969249_10201235024976300_859103140_n.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggPqqP6QIP9VAVG2awdmAvKiMIHQX0UyKuYZLaUhu_9WJLebTSez2GBcpGta_v-GW6njKx8zOI1Dt9DkrMizWoBbQCBlQegnGtskfUZzeA3Ew-sf_Ms0_8zdQ3JNRWqUgc1j9pazc_ItNT/s1600/554931_10201235005295808_523429887_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggPqqP6QIP9VAVG2awdmAvKiMIHQX0UyKuYZLaUhu_9WJLebTSez2GBcpGta_v-GW6njKx8zOI1Dt9DkrMizWoBbQCBlQegnGtskfUZzeA3Ew-sf_Ms0_8zdQ3JNRWqUgc1j9pazc_ItNT/s200/554931_10201235005295808_523429887_n.jpg" width="200" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCOK1v_x5wdiqqsDnR7vjE6KpjNIB7Q8cFEhzXuITQdnlerIVzL4uuE1wCdf95_aXThChOUOCNwowRayfsz8SDPVuh08Z_rbFUs7y-_Ut4f_gGb1uaMgbKZiywk3tJT33ojxdRVLT3DMEr/s1600/DSCN2373.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><span style="font-size: large;"> </span></div>
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<span style="font-size: large;"> In August The VA built a ramp to make it easier to get Bob out of the house- We love it!!!</span></div>
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<span style="font-size: large;">Bob being Bob- I had to lay him down next to his power recliner and he had to take a look at the mechanism</span> <br />
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<span style="font-size: large;">In June we sent his 67 Mustang to the car doctor's so we can spend this next summer cruising around</span> </div>
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<span style="font-size: large;">It was a very full summer with good things, hard things and many many blessings for which we are so grateful for. As we approach Thanksgiving and Christmas we reflect on God's goodness and mercies in providing all our needs. We are blown away by the folks at our church who are ministering to us by providing much needed support in helping us cope with Bob's challenges. </span></div>
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<span style="font-size: large;">At the beginning of this journey I had no idea how all these things would come to pass. But God told me he had my back in </span><span style="font-size: large;">Joshua 1:3 -</span></div>
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<span style="font-size: large;"> <em>"Every place upon which the sole of your foot shall tread, that have I given to you......"</em> </span></div>
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<span style="font-size: large;">He has kept his promise in ways I never imagined.</span></div>
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<span style="font-size: large;">Have a very Happy Thanksgiving</span></div>
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Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-30530630129046249322013-07-11T15:03:00.000-07:002013-07-11T15:03:27.110-07:00Walking from Earth to EternityThe last few weeks have been a roller coaster. It began with a trip to the ER just to check Bob out after he had lost consciousness for a unknown length of time. He was very confused and disoriented when he woke up, so fearing a stroke I called 911 and had him sent to the VA hospital. While there he was tested for a UTI (urinary tract infection). Evidently UTI's can be responsible for the confusion. It was confirmed that he had one and we had a choice to treat it at home or admit him "just in case" it flared up. With MSA we have to be careful regarding a UTI affecting the kidney so we were prudent and elected to be admitted.<br />
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Remember that slippery slope I told you all about a few months ago? Well it's getting steeper and more slippery.<br />
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Bob has been in the VA Hospital for almost two weeks and while there he has been under the microscope of several Specialists, MD's and Practitioners. All of these have opinions and few of them have had to deal with MSA. I feel like I have been trying to fish with my bare hands trying to meet each one and determine what it is that Bob truly needs and who will be providing it. At this point the UTI is gone, His BP is evening out (sort of) he's gained weight and he is bored (no wifi). We have determined, and he has agreed, that he needs a feeding tube to supplement his nutrition as he was burning more calories eating than he was gaining and was becoming malnourished, This tube will not prevent him from enjoying food and can be hidden with clothing. We have decided on this so that we can have as healthy and active a Bob as possible.<br />
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We have hit a snag though as his physiology and his issues with anesthesia have proved to be too difficult for our local VA and they are working on finding someone who can do the procedure. This will mean a transfer to another facility. I'm feeling confident that it will all be resolved as I am comforted by his current Primary care Dr and his Neurologist who are very much invested in being Bob's advocates.<br />
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And so we wait.<br />
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And the title of this post?<br />
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Last Sunday this was a phrase I saw, I can't remember the context, a song, a reading, it doesn't matter, it struck me as this is what we are doing. Bob has started his walk from this earth to eternity, into God's glorious presence. We are confident in the Salvation that was bought and paid for by Jesus Christ. Bob has always anticipated what his life is going to be like when he gets there. He has a million questions. He believes he has been given some idea as to what his mission will be. I have been personally reassured that the Lord is looking forward to taking Bob into his care. Eternity - what a most glorious destiny, everlasting life in the presence of God! We are told that we can not even imagine it<br />
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<table border="0" cellpadding="0" cellspacing="0" class="table_bible" id="table_bible"><tbody>
<tr id="1Cr_2_9_1064009"><td align="left" class="td_bible_verse_heading" valign="top" width="68"><span class="nowrap"><a href="http://www.blueletterbible.org/Bible.cfm?b=1Cr&c=2&t=KJV#comm/9">1Cr 2:9</a></span></td>
<td></td>
<td class="td_bible_text" valign="top">But as it is written, Eye hath
not seen, nor ear heard, neither have entered into the heart of man, the
things which God hath prepared for them that love him.
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This is an amazing promise! This is what Bob is walking towards and I will cheer him on. Is this not what we believe that we were destined for? Is this not what we were accepting when we chose to follow God? Is this destination not the original point of our being created in the first place - to be in a relationship with the God of the ...Everything?</div>
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This is the prize, the goal we are all striving for, to be done with sin and it's impact on our lives, to be in an amazing and perfect relationship with God as we were intended to be.</div>
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But the journey is hard, the road is difficult even treacherous. We are weary and scared, grieving and clinging to one another. Let's face it this part of the story sucks, big time! We aren't "Giving in" as some may see it. We just are really clear that we will be parted so much sooner than we would choose, if it were up to us. But we will keep our eyes focused on Jesus, we will endeavor to make this walk as honestly and faithfully as we can. We won't hide the pain or the tears but we will also always give praise to God and share our story of His abundant love in our lives.</div>
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So...dying sucks, eternity with God doesn't, and that's how we view it as we walk from earth to eternity.</div>
Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com6tag:blogger.com,1999:blog-6324126725485284042.post-89140585526655076212013-06-26T13:57:00.000-07:002013-06-26T13:57:28.741-07:00"Letter to patients with chronic disease" MUST READ! I read this after it was posted on one of the MSA facebook pages I subscribe to and I thought it was worthy enough to pass along to all of you.<br />
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<a href="http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/">http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/</a><br />
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I found a lot of good insight that might help me deal with any and all new professionals that I come into contact as Bob's disease progresses and perhaps it ill help those contacts be more successful.<br />
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SusanSuper Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-64215443069773542762013-06-12T07:17:00.000-07:002013-06-13T08:39:25.665-07:00Not your ordinary Hospital BedAs things progress in this disease I endeavor to be proactive and prepare for things ahead of time. Bob's walking is getting more and more unreliable and we have added the option -"Do you want to walk or ride" as to how he gets from bed to chair these days.<br />
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So I have started making room for a wheelchair. Last summer after his gall bladder surgery and the resulting problems with middle of the night aspiration we obtained a hospital bed. Not wanting to move into another room - and we only have a one bedroom apartment- I placed a twin bed next to it. Unfortunately there was very little if any room left to maneuver. <br />
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My solution? I found out that there could be room to put a trundle bed under the hospital bed. So I worked out a floor plan. I had to consider several things. first of all is the position that he tends to sleep in, he would want to be facing me so he could see me (and for spooning potential). Then there is the placement of the TV and if he could see it. The problem here is that he has very limited movement so we have to work with in his parameters, and then there is the space available along each wall and how all the other furniture fits.<br />
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The last piece of the puzzle is how we want our bedroom to feel. We don't want it to be a "Sick room" or "Hospital room" we want OUR bedroom, our sanctuary, our lazy day hangout place. Bob wants to keep as much of the bedroom furniture, that we purchased 32 years ago, as possible.<br />
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So here is my solution,<br />
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We placed our original headboard up against the wall and then pushed the Hospital bed sideways up against it - kind of looks like a day bed<br />
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Still have our hutch (with knicknacks and photos) next to the bed is the "Bob station" and we have plenty of space for any kind of wheelchair to come into the room<br />
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The trundle bed revealed. The hospital bed has up to 15 inches of clearance. Trundle bed frames are 4" to 6" and mattresses can be 4" to 8"<br />
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Trundle bed pulled out</div>
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And popped up into place</div>
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Sleeping together side by side for 34 years. The trundle bed can also be moved out of the way to allow access if I need it during the night. If he gets to moving around too much with the tremors I can protect him with the bedrails and I can get some sleep without being shaken all night.<br />
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The Bob station is placed at the head of the bed and has all the things I need for the morning and evening routines - keeps me from running around collecting everything and a surface to work on<br />
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Lotions, potions, powder and towels, paper, tissue and wipes. Timers, gloves, lots of love, Gregorian chants at night. Blood pressure cuff, stehescope, Scissors, toothbrushes and cups everything we need for the night.<br />
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Bulky items are under the table - Now you see them</div>
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Now you don't</div>
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We now have a bedroom that is now wheelchair friendly, has all the amenities I need for his care and our comfort, is still our sanctuary and I actually gained some storage spots I didn't have before.<br />
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One more thing :<br />
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Marlin our 19yr old cat was quite distressed that his "Spot" had disappeared. For those of you who follow "The Big Bang Theroy" show, he was very Sheldon Cooper about it. After a week I think he has finally found his "Spot" and now the arrangement is officially Marlin approved and we can all heave a sigh of relief.Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-91647947095268284762013-05-27T08:14:00.001-07:002013-05-27T08:23:41.445-07:00My Veteran- Happy Memorial Day<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU6WbHMHTdKN_hTgxwYNZwextiKuoVS8nNGWpyeckDfFfLrKlAftlc27y9peWX_IN7-BEFSi4fomQDel1DtW0dVHQHvmP0nI0lR9vVd9LCA5SfL64ipIfTX-KjLXajaCAD4f1eUorzybYx/s1600/9031_1172406388947_6132371_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="208" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU6WbHMHTdKN_hTgxwYNZwextiKuoVS8nNGWpyeckDfFfLrKlAftlc27y9peWX_IN7-BEFSi4fomQDel1DtW0dVHQHvmP0nI0lR9vVd9LCA5SfL64ipIfTX-KjLXajaCAD4f1eUorzybYx/s320/9031_1172406388947_6132371_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">USS Elliot - Bob's Ship<br />
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Today we will be going to a church friend's house for a picnic - maybe</div>
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They will see him freshly bathed, a haircut and beard trimmed, polo shirt, crisp board shorts and boat shoes.</div>
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They will also see the bright red scooter with his pirate flag, the stooped posture, masked face and barely there voice.</div>
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I see a young man on the bow of a destroyer in full dress uniform with a grin as wide as the oceans as he gazes down at his bride on the dock.</div>
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I see him at the helm of his sailboat screaming across the Bay</div>
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Thank you to all the veterans that have made our lives possible.<br />
Have a happy Memorial Day</div>
Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-89242148444854888992013-05-22T17:03:00.003-07:002013-05-22T17:03:56.257-07:00I'm Scared - Choosing Faith over worry. <br />
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It's 3 am and Bob wakes up. He has been moaning in his sleep and now he is awake. His body is suffering with micro tremors, I can't see them, but he can feel them and they have awoken him. </div>
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He asks me if he took his scheduled pills?</div>
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Yes.</div>
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When are the next ones due?</div>
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6am.</div>
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Too long!</div>
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I'm sorry. Would you like some wine? </div>
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Can't swallow, muscles are too tight.</div>
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How about in a syringe?</div>
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Yes, thank you.</div>
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There were other issues that needed to be dealt with also and so I crawl out of my bed and tend to them. But I have to confess in a Martha sort of way. I was grumbling. Lack of sleep, fear of the ever present progression of this disease, living in my self serving flesh. I struggle to keep my eyes focused on God, to lean on Him, to serve Bob as unto the Lord. And then I hear the words.</div>
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I'm Scared</div>
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How do I comfort him? I'm scared too. What is he scared of? </div>
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What am I scared of?Are they the same things?</div>
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How do we negotiate this journey?</div>
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Fear</div>
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Worry</div>
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Paralysis</div>
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Ineffectiveness</div>
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Frozen</div>
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Anger</div>
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Frustration</div>
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Lost</div>
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These are the things we battle, these are our adversaries, our enemies, </div>
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the host that encamps against us.</div>
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And I whisper to God, in the middle of the night. "Help me Lord to serve you, to care for Bob as if I was doing it for you, Not in my own strength but through yours. To your Glory and not in a self absorbed inconvenienced state of mind. I love Bob, I love you, help me to be the very best Wife, Servant and Daughter of God I can be."</div>
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Its 10 am, the night has passed, things have calmed down, we got some rest but we are moving slowly. Having set Bob up with his breakfast I go downstairs to have a quite time with the Lord. I've been reading Chuck Swindoll's - "Living the Psalms <em>Encouragement for the Daily Grind</em>"</div>
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Today?</div>
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Psalm 27 - The Grind of Fear</div>
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<em><span style="font-size: xx-small;">The Lord is my light and my salvation;</span></em></div>
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<em><span style="font-size: xx-small;">Whom shall I fear?</span></em></div>
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<em><span style="font-size: xx-small;">The Lord is the defense of my life;</span></em></div>
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<em><span style="font-size: xx-small;">Whom shall I dread?</span></em></div>
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<em><span style="font-size: xx-small;">When evildoers come upon me to devour my flesh,</span></em></div>
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<em><span style="font-size: xx-small;">My adversaries and my enemies, they stumbled and fell.</span></em></div>
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<em><span style="font-size: xx-small;">Though war rise against me,</span></em></div>
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<em><span style="font-size: xx-small;">In spite of this I shall be confident.</span></em></div>
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<em><span style="font-size: xx-small;">One thing I have asked from the Lord, that I shall seek:</span></em></div>
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<em><span style="font-size: xx-small;">That I may dwell in the house of the Lord</span></em></div>
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<em><span style="font-size: xx-small;">all the days of my life,</span></em></div>
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<em><span style="font-size: xx-small;">To behold the beauty of the Lord</span></em></div>
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<em><span style="font-size: xx-small;">And to meditate in His temple.</span></em></div>
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<em><span style="font-size: xx-small;">For in the day of trouble He will conceal me in His tabernacle;</span></em></div>
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<em><span style="font-size: xx-small;">In the secret place of His tent He will hide me;</span></em></div>
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<em><span style="font-size: xx-small;">He will lift me up on a rock.</span></em></div>
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<em><span style="font-size: xx-small;">And now my head will be lifted up above</span></em></div>
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<em><span style="font-size: xx-small;"> my enemies around me,</span></em></div>
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<em><span style="font-size: xx-small;">And I will offer in His tent sacrifices with shouts of joy;</span></em></div>
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<em><span style="font-size: xx-small;">I will sing, yes I will sing praises to the Lord.</span></em></div>
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<em><span style="font-size: xx-small;">Hear, O Lord when I cry with my voice,</span></em></div>
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<em><span style="font-size: xx-small;">And be gracious to me and answer me.</span></em></div>
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<em><span style="font-size: xx-small;">When you said "Seek My face," my heart said to You,</span></em></div>
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<em><span style="font-size: xx-small;">"Your face, O Lord, I shall seek."</span></em></div>
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<em><span style="font-size: xx-small;">Do not hide Your face from me.</span></em></div>
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<em><span style="font-size: xx-small;">Do not turn Your servant away in anger;</span></em></div>
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<em><span style="font-size: xx-small;">You have been my help;</span></em></div>
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<em><span style="font-size: xx-small;">Do not abandon me nor forsake me,</span></em></div>
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<em><span style="font-size: xx-small;">O God of my salvation!</span></em></div>
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<em><span style="font-size: xx-small;">For my father and my mother have forsaken me</span></em></div>
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<em><span style="font-size: xx-small;">But the Lord will take me up.</span></em></div>
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<em><span style="font-size: xx-small;">Teach me your way, O Lord,</span></em></div>
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<em><span style="font-size: xx-small;">And lead me in a level path</span></em></div>
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<em><span style="font-size: xx-small;">Because of my foes.</span></em></div>
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<em><span style="font-size: xx-small;">Do not deliver me over to the desire of my adversaries.</span></em></div>
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<em><span style="font-size: xx-small;">For false witnesses have risen against me.</span></em></div>
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<em><span style="font-size: xx-small;">And such as breathe out violence.</span></em></div>
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<em><span style="font-size: xx-small;">I would have despaired unless I had believed that I would</span></em></div>
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<em><span style="font-size: xx-small;"> see the goodness of the Lord</span></em></div>
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<em><span style="font-size: xx-small;">In the land of the living.</span></em></div>
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<em><span style="font-size: xx-small;">Wait for the Lord;</span></em></div>
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<em><span style="font-size: xx-small;">Be strong and let your heart take courage;</span></em></div>
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<em><span style="font-size: xx-small;">Yes wait for the Lord.</span></em></div>
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<em><span style="font-size: x-small;"></span></em> </div>
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How good is my God?That he responds to my needs and cares. And so I read Swindoll's words of insights and I write the inspired thoughts that sooth my soul and draw me closer to Him. I cry, I pray, I am refreshed in my spirit and my resolve and the I open my Facebook to this</div>
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<em><span style="font-size: x-small;"></span></em> </div>
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this was posted by a friend from the church I grew up in -Valerie Higley</div>
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and I respond in the comments section</div>
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<span data-ft="{"tn":"K"}" id=".reactRoot[395].[1][4][1]{comment4878861010352_62412468}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[395].[1][4][1]{comment4878861010352_62412468}.0.[1].0.[1].0.[0].[0][2].0"><span style="font-size: xx-small;"><span id=".reactRoot[395].[1][4][1]{comment4878861010352_62412468}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span id=".reactRoot[395].[1][4][1]{comment4878861010352_62412468}.0.[1].0.[1].0.[0].[0][2].0.[0].[0]">I've been reading Chuck Swindoll's book <strong>"Living the Psalms- <em>Encouragement for the Daily Grind</em>"</strong>.</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span style="font-size: xx-small;"><span><span> Psalm 27 is the Psalm for the Grind of Fear. Worry is what we do when we are fearful, but if we choose to follow David's example and we can face fear with Praise, Confidence</span></span><span id=".reactRoot[395].[1][4][1]{comment4878861010352_62412468}.0.[1].0.[1].0.[0].[0][2].0.[3]"><span id=".reactRoot[395].[1][4][1]{comment4878861010352_62412468}.0.[1].0.[1].0.[0].[0][2].0.[3].0"><span id=".reactRoot[395].[1][4][1]{comment4878861010352_62412468}.0.[1].0.[1].0.[0].[0][2].0.[3].0.[0]">, Remembering past Victories God has done in your life, Seeking His help and waiting on God. All the while singing a song of victory.</span></span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span style="font-size: xx-small;"><span><span><span> Fear can paralyze us, but if we focus on these things we can break it's hold. The only way through is to rely on, to trust, to be secure, to have assurance in our relationship to a God who is not some distant Deity. An impersonal, abstract, theological Being. He is a very personal, ever present Friend and Helper. Our confidence and stability comes from this relationship because it is not our strength but the Lord's that sees us through. He is our only foundation and He is unshakable!</span></span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span style="font-size: xx-small;"><span><span><span></span></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span style="font-size: xx-small;"><span><span><span>This was my morning quite time and a paraphrase of Chuck Swindoll's writing on Psalm 27 - Susan</span></span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span style="font-size: xx-small;"><span><span><span></span></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>A short brief exploration of the lessons He has been teaching me today, and in fact for awhile, the themes have been:</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>Keep your eyes on Jesus</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>Keep your focus on Him</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>Serve as unto Him (not to others)</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>Do all to the Glory of God</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>He is Personal</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>My confidence is in Him not me</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>He is my foundation (Unshakable)</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>So are we scared? Yes and we have reason to be. How do we face it? With a faith and confidence in God. I choose faith over worry. Confidence in God over fear of this disease. And I remember early on He told me:</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>I've got this</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>Don't worry</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;">"Every place that the sole of your foot will tread upon I have given to you..."</span></em></strong></span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;"></span></em></strong></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;">"Have I not commanded you?</span></em></strong></span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;"> Be strong and of good courage;</span></em></strong></span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;">Do not be afraid or dismayed;</span></em></strong></span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;">For the Lord your God is with you</span></em></strong></span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;">wherever your go." (</span></em></strong></span></span></span></span></span><span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;">Joshua 1: 3 & 9)</span></em></strong></span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;"></span></em></strong></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span>And I find comfort and strength with a God who walks with me through the wee early hours of the day when my strength wavers.</span></span></span></span></span></div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span><strong><em><span style="font-size: xx-small;"></span></em></strong></span></span></span></span></span> </div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span><span><span></span></span></span></span></span> </div>
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Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com2tag:blogger.com,1999:blog-6324126725485284042.post-47388682244354650132013-05-10T08:48:00.000-07:002013-05-10T08:48:32.241-07:00The Slope is getting slipperySorry for the gap, Bob has been having a tough 8weeks.<br />
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Up until now Bob has been steadily but gently declining, each year I can see that he has needed more and more help but it hasn't been so dramatic or burdensome. One year he can get in and out of bed, then he needs help a couple of times and months later you realize that you are helping him every time and he seriously can not move around in bed without help. Bear in mind that I try not to offer assistance when he truly dosen't need it, I don't want to start him down any paths of dependance until it is truly needed.<br />
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But recently it seems that we are in that place where things seem to be accelerating. Since March we have had at least three serious events and I'm not sure when the next one is going occur. Or even what that will be, although I know of a few things that could go south really fast. So I am getting more help and getting Bob to start accepting care from others in even the more sensitive things. He is a very modest man but I just can't keep doing it all and it is getting more and more taxing. So the downword slide is getting steeper and we are rolling faster.<br />
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I will fight to keep Bob as healthy and happy as possible for as long as possible. I don't see an expiration date on him anywhere and I am not "giving in" or "giving up". I will keep my roots solidly in God's word and my relationship to Him fresh <br />
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<em><span style="font-size: x-small;">"It is of the Lord's mercies that</span></em></div>
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<em><span style="font-size: x-small;"> we are not consumed, because His </span></em></div>
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<em><span style="font-size: x-small;">compassions fail not.</span></em></div>
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<em><span style="font-size: x-small;"></span></em> </div>
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<em><span style="font-size: x-small;">They are new every morning: great</span></em></div>
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<em><span style="font-size: x-small;">is thy faithfulness.</span></em></div>
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<em><span style="font-size: x-small;"></span></em> </div>
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<em><span style="font-size: x-small;">The Lord is my portion, saith my</span></em></div>
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<em><span style="font-size: x-small;">soul; therefore will I hope in Him.</span></em></div>
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<em><span style="font-size: x-small;">The Lord is good unto them that</span></em></div>
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<em><span style="font-size: x-small;">wait for Him, to the soul that</span></em></div>
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<em><span style="font-size: x-small;">seeketh Him." (Lam 3:22-25)</span></em></div>
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I believe that God has been preparing me since the begining of this journey. He has whispered in my heart, giving me an inkling of what is happening, comforted me by showing me encouraging scripture.</div>
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<em><span style="font-size: x-small;">"Every place that the sole of your foot shall tread upon, that have I given to you..."</span></em></div>
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<em><span style="font-size: x-small;">Joshua 1:3</span></em></div>
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Giving me strength and support, security so I can concentrate on Bob's needs and know that mine are being taken care of. </div>
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I am often asked how I can be so cheery, strong, positive. I'm not always, I am a human, boistrus, Irish redhead who can go from nice church lady to a sailor in a heartbeat. But that's the beauty of my relationship with God. He knows, He gave me all the character traits that make me both a wonderful caregiver for Bob and that crusty little sailor. My job is to allow Him to guide me and prepare me for His work, this life, Bob's care and forever after with him.</div>
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So here we are, the rock is picking up speed, we are keeping close to God and hoping for a really good long run. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvGgW1ex997dXkfzpBPoKL2OlBmEW-yrW4KCzVllLglWtS8eftNB2_eC-UKMUXEJY5VkWuHlFsOs1H3wwInZHTcUSLUnvyR3tbQnbL5myAGePgN9PLDqgZN3IlnT1Q0xK1kO7du1C12WSw/s1600/006.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvGgW1ex997dXkfzpBPoKL2OlBmEW-yrW4KCzVllLglWtS8eftNB2_eC-UKMUXEJY5VkWuHlFsOs1H3wwInZHTcUSLUnvyR3tbQnbL5myAGePgN9PLDqgZN3IlnT1Q0xK1kO7du1C12WSw/s320/006.JPG" width="320" /></a></div>
Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-3104822499879135402013-03-01T12:41:00.000-08:002013-03-01T12:41:20.068-08:00Wear Purple!March is MSA Awareness Month!<br />
The Ribbon color is Purple!<br />
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All across the US- MSA warriors are petitioning their states to, first, make a proclamation of March as MSA Awareness month and then to push it forward into a state law. Many have reached the proclamation stage, a few are already state law. I would give you a list but I haven't seen one, but I do know that one is currently being created and I will include it later.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSgm0ysul-ZI9Y1yuW7QWqhv284kposKbmHjwnqd6d9mYkwBUpOG13QEPHULCIOga1NXP0gMOsS_tVxot8uAnCBBoyTUPCNPDALcBPWro0yt2TApzelWyjav63QRJIxtqrVGy0TuHbogvn/s1600/522537_4730908196061_1378414469_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSgm0ysul-ZI9Y1yuW7QWqhv284kposKbmHjwnqd6d9mYkwBUpOG13QEPHULCIOga1NXP0gMOsS_tVxot8uAnCBBoyTUPCNPDALcBPWro0yt2TApzelWyjav63QRJIxtqrVGy0TuHbogvn/s320/522537_4730908196061_1378414469_n.jpg" width="240" /></a>The difference between proclamations and the laws is that the proclamations are only for that year while the law makes it permanent.<br />
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When Bob was first diagnosed with MSA I found very little info and support out in cyberland. I continued my association with the Parkinson's Resource Center here in town and still count the caregivers support group my mainstay support along with the wonderful people in my church.<br />
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Gradually through social media I have met and connected with others in the MSA community and watched it become more and more active and persistent in raising awareness of this rare disease. <br />
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What is MSA?<br />
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MSA is a rare neurological disease that affects about 15,000 people in the US. It is considered a degenerative disease that affects one's balance, bladder, bowls, blood pressure, speech, swallowing, sleep, breathing often accompanied by muscle rigidity and tremors. Most often patients are misdiagnosed as having Parkinson's disease. To find out more check out the press release posted on <a href="http://www.msaawareness.org/">http://www.msaawareness.org/</a><br />
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How can you help?<br />
<ul>
<li>Wear a purple ribbon and when people ask what it's for tell them about MSA.</li>
<li>Help us raise funds by purchasing the beautiful awareness products produced by several of the MSA warriors. Many of these people are the caregivers of folks with MSA and they are making beautiful- T-Shirts, hats and bracelets that help both make MSA visible and the funds go to help support research.</li>
</ul>
T-Shirts and hats <a href="mailto:bjconnelly@netnet.net">bjconnelly@netnet.net</a><br />
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MSA awareness bracelets msaawarenessbracelets.weebly.com<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih-JyZMl2Xqk3mS75OfUqtJDololcLqiqSNWVrnY854EEpVZINdmeP96KE_b0PQPoW0CvVoKEZjraD1tp7a29Jv4ZD1GMAjjqMglHvk0CeSA_glX4zHnTXT_IkdKBy7Ign0y6ryL_m95be/s1600/546813_213825255424338_108715857_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih-JyZMl2Xqk3mS75OfUqtJDololcLqiqSNWVrnY854EEpVZINdmeP96KE_b0PQPoW0CvVoKEZjraD1tp7a29Jv4ZD1GMAjjqMglHvk0CeSA_glX4zHnTXT_IkdKBy7Ign0y6ryL_m95be/s200/546813_213825255424338_108715857_n.jpg" width="150" /></a></div>
<ul>
<li>Pray for both a cure for MSA and for the provision of everything that people currently dealing with MSA need.</li>
<li>Keep in contact with those you know that have MSA. They can often become very isolated and social interaction is an amazing lifter of spirits, both for the person with MSA and the caregiver. </li>
<li>Write to them - the caregiver can read the letters and cards to them, let them know they are not forgotten. and don't forget the caregivers.</li>
<li>Treat the caregivers- the better spirits they are in the better care they can give.</li>
</ul>
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Many people have asked how they can help me and have even offered to take over caring for Bob while I get away. I really appreciate the offers and sincerely think about how I can accept the offers. Getting away for a few hours is do able, but we are always mindful of the intensely personal care that can be required that involves extreme trust and can limit our ability to accept the offers. So if you offer and truly want to help don't be dismayed if it takes me awhile to figure it out. I do want the help, I just have to figure out how to arrange it.<br />
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Case in point. A man from my church offered to spell me for a bit and the end result is that he will be taking Bob to our men's retreat. The retreat is located at a conference grounds about 45 mins away. An overnight is not impossible but it would require a LOT of packing and I would have to attend. But I can get him ready and hand him off to the men of this church who can bring him home Friday night and pick him up again Saturday morning. I am confidant of his care because Jim is familiar enough with Bob and several of the men attending are paramedics, nurses, doctors and emergency responders. He couldn't be in a better place and I can be relaxed while he is away. Also we have product that we can use during the day that can alleviate the need for "embarrassing" moments.<br />
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I am excited to hand him off to the men of Crossover Church, both for Bob and for the others. There is as much joy in ministering to others as there is in receiving the ministries. Both will benefit greatly and who knows how God will work in this outing.<br />
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I know I started this blog entry as a way to promote MSA Awareness month, but it seems to have morphed into a Bob Awareness tutorial. Funding for research, finding therapies that help those who have the MSA now and looking forward for a cure for the future is very very important, just as important is caring for those who suffer with it now. So I guess this post is truly all about raising awareness of MSA to find a cure and to minister to those who suffer.<br />
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So don't forget to wear purple for MSA and Bob Awareness month!!!!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzMhyphenhyphenrDp4Ec__wnMo7hS0U3uBuUt_1TrHAcdkhVs2PwIo4VrItGBTIuxlD9l6TegZHLFX_odS-U9Xg6kVtQfLWcIrofdACUNQM-MW3UNELU_MfV5tD2n6nG9QhdyISylOasvvQHBvYVEWl/s1600/9031_1172438469749_7724550_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="208" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzMhyphenhyphenrDp4Ec__wnMo7hS0U3uBuUt_1TrHAcdkhVs2PwIo4VrItGBTIuxlD9l6TegZHLFX_odS-U9Xg6kVtQfLWcIrofdACUNQM-MW3UNELU_MfV5tD2n6nG9QhdyISylOasvvQHBvYVEWl/s320/9031_1172438469749_7724550_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of my favorite pictures of Captian Bob taken shortly before MSA entered our lives</td></tr>
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Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-65704911844374541072013-02-20T07:45:00.000-08:002013-02-20T07:45:31.322-08:00Life, Monster Trucks and MSA AwarenessSorry I haven't posted in a while, ever since Bob's surgery in August, I have just felt a little out of step. Whenever you go through something as traumatic as his gall bladder surgery was it's kind of like a tuning fork - once you hit it it takes a really really long time to stop quivering and towards the end it's so subtle that most won't even see that it's still vibrating.<br />
Somehow though I feel like I am beginning to get back to some sort of normal or back to a healthier place.<br />
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One way to tell that we are getting back on track is when we get moving and do something "<em>different"</em>. It's usually something relatively spontaneous, a little wacky, lots of fun and usually has very little cost involved. This tendency of ours has led us to some very interesting places and kind of our signature approach to life. The last few years we have been a bit limited because spontaneity is a little difficult with the logistics of a chronic illness.<br />
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We have an early morning news show called "Good Morning Northwest" that I like to have on in the background of my waking up ritual on an occasional morning. On Fridays they have one of their anchors at a "secret" soon to be revealed location and they have some sort of give away. Two weeks ago it was just a few blocks away at a local car dealership and they were giving away tickets to the "Monster Truck Jam". So I screwed up my courage, banished my relunctance to get dressed and go out into the dark cold of an early snowy morning, and drove to the spot and got two free tickets to the event.The one compelling reason that I used to convince myself to go was that I really like the anchor that does these "For Free Friday" things and March is coming.<br />
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March is MSA Awareness month (Everyone wear purple!) and many of the MSA sites that I frequent have been making a coordinated effort to get the word out. As a result we can download a professional press release and packet that has all the info you need to pass on to your local media and lawmakers to promote MSA Awareness. so I booted up the computer, printed a copy and off I went.<br />
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So now I have done my civic duty and scored some tickets.<br />
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And on sunday we went to "MONSTER TRUCK JAM"!</div>
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We had a great time! Back when Bob was a teenager he was very involved in racing, and we have always enjoyed going to the occasional sprint car race, watching Formula 1 on TV, and Bob loves to watch the tractor shows on the Rural TV channel. So at the begining of the show they are all reving their motors and the whole place is just vibrating with sound and he starts to cry. I was a littled worried it was because his ears might be too sensitive (he did have ear protection) but he said he was just filled up with memories and yes he was enjoying it.<br />
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Often times Bob has difficulty with facial expressions and to those that don't know him he can look like he has a mask on, but on that day there were some very definite expressions of joy that crossed his face and it was a very precious thing to see. What a wonderful day, a simple thing that became a very bright memory.<br />
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We need these bright momments, because sometimes our reality can really suck. Lately we have had some health challenges and last week our MSA community lost a very dear man to this awful disease. Bob and I will be traveling to Everett with Kym Crowe (who lost her mom in Nov) so that she and I can attend the services. Kym makes these amazing MSA Awareness bracelets to help raise funds for research.<br />
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<a href="https://www.facebook.com/MsaAwarenessBracelets"><img alt="" class="_s0 _rw img" src="https://fbcdn-profile-a.akamaihd.net/hprofile-ak-ash4/373040_147214962085368_1581556642_q.jpg" /></a></div>
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<a data-hovercard="/ajax/hovercard/page.php?id=147214962085368" href="https://www.facebook.com/MsaAwarenessBracelets">MSA Awareness Bracelets made by Kym</a></div>
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I know Kym is still in the throes of greiving her mom and I too have been impacted by his passing. Keith was a believer and I am so glad that he is at rest and in God's care. Pam however is now faced with his loss and we go to wrap our arms around each other to offer comfort, understanding and love.</div>
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Pray for us on our journey and remember that:</div>
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March is MSA Awarenes month and wear purple for Connie, Keith and Bob.</div>
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Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-19998714662267512902012-09-06T10:35:00.001-07:002012-09-06T10:35:08.222-07:00PerseveranceRecovering from His gall bladder surgery has been difficult. As most surgeries are for patients who have a neurological/movement disorder disease. Mostly because in a major surgery they have to put all of you completely asleep and that includes all the muscles and automatice systems that have a tough time performing on a regular basis. Also no matter how good the staff is the regular schedule and dosing of meds is not quite the same as at home. Then there is always the wait and see if any of the sypmtoms we are now dealing with are going to be permanent, a new "normal" as it were.<br />
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The challenge that we have been dealing with is called Orthostatic Hypotension (Spelling?). What that means is his blood pressure becomes non-existant and he passes out. While he is still concious, he is <br />
non-responsive. This happens to be very much tied to his postural position and occurs mostly when he is sitting or has been standing for too long. The minute however that I lay him down in a prone position he is awake and talking- it's almost instant.<br />
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So we evaluate. Is this just the path of recovery? Is it a residual from the Anesth/pain meds? Is this a new symptom we have to learn to cope with? How do we cope with for now and in the future? Well The answer to the first question is wait and see and we hope that this is all it is, timje will tell. Same for the secound question. The third and fourth question - assume that this is the case, do your research, try different approaches, have patience.<br />
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We learned that his biggest challenge was in the morning, when he is still waking up, his body is taking longer to do so and he never was a pop up and be chipper man on the go kind of guy- so - Give him a chance to be fully awake, sit him up in the new adjustable bed and give him "special" fluids. That means 2 8oz cups, one of water with benefiber and one of the "Power" drinks, along with his morning meds. This will take about an hour.By then he is ready to get dressed and out to his chair avoiding the bathroom as that has it's own inheirant dangers in the mornings. So far we have been successful and we have had limited incedences of the passing out as opposed to so many we could hardly move out of bed.<br />
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It's now been 30 days since surgery, his meds have been stabilized and we are having fewer issues, but they still occur so perhaps in some degree we have a new normal and while we have learned to cope with them we do know that there is a med than can also help us with controlling it and we will probablly have to add that to the list. This comes as no surprise to us as Hypotension is one of the distinguishing symtpoms of this disease, we were just hoping for a bit more of a reprieve from it becoming another symptom to deal with on a daily basis.<br />
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So it has been a long and trying month, but with patience, thought, research, support and prayer we have made it through and we are now going to go and enjoy the Port Townsend Wooden Boat Festival. Pictures to followSuper Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-71813486042871701052012-08-17T12:17:00.001-07:002012-08-17T12:17:15.156-07:00Summer, Surgey and SupportThis summer Bob has made it his business to be as involved in our church as much as he can. He has been a helper in the children's bible study classes. He isn't able to teach the lessons but he can read the scripture and participate in the conversation, somehow the kids just soak in every word he says. It was quiet enough to hear a pin drop when he was reading and this was in a room full of 22 5th and 6th graders - no wiggles either!<br />
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We also as you have seen in a previous post gone to Ashland, Oregon and rode the Hiawatha trail in Montana on the 4th of July, and aquired a van. We are planning to go to Port Townsend for the Wooden Boat Festival and maybe to Calif for my HS reunion. So the summer has been busy but along with all this busyness has come some health issues.<br />
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In the middle of July we had our fisrt heatwave of the year and we weren't prepared for the effects of it. Up til now he has been fairly resilliant regarding heat but this year he beame ill, also our AC was not functioning properly, and we wound up in the ER with dehydration and other complications - no big deal but definitely a cautionary experience. So we got home and were hydrating and trying to keep him cool and his gall bladder went south.<br />
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Bob has a high pain tolerance- always has- but I think the disease also helps block the pain receptors to an extent, at least so that what he calls an 8 we would call a 16 pain level. So when he says he has pain I need to pay attention. Granted he is always in some kind of pain and it can get old and I can get desensitized to it, but when he really starts to complain I need to not dismiss it so quickly as it could be VERY Important.<br />
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I took him in on a Thursday evening and by 2am Fri they admitted him and he had surgery by about 1pm. The doctor said it was just about the worst gall bladder he had ever seen and they kept him for 4 days. Even then he was still in pretty bad shape and the first few days at home were very intimidatuing for me. It was also a wake up call as we are not really prepared for what he will need as his disease progresses. Our home is not handicapped freindly and we are going to have to make changes if we wish to be able to continue living here. A ramp, a hospital bed, remodeling the bathroom, rearranging the living room to make room for wheelchair accesability and so on. As quickly as the gall bladder came up and upended our lives who knows what else will come along, how quickly and how unprepared we will be for that? So now is the time to make the changes, now before we desperately need it and trying to find a solution in a time of stress is overwhelming case in point----<br />
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We live on the secound floor. There are stairs on the inside from the office to the apartment. There are stairs on the outside from the ground floor to the private entrance to the apartment. These stairs are both narrow and one has a turn. We also have access to a locked parking lot behind us that is at the same level as the apartment - however there are 4 steps, a landing and a step up to croos th threshold into the apartment.<br />
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That's the setting. I had him transported home from the hospital by ambulance and we arranged a Wheelchair Specialty transport back to the Dr for a post op. I can not believe that I had an argument with the "Services" people. They actually count how many steps they are allowed to transport the pt up. I wanted to yell at the that if it was easy I would not have called them. I will refrain from posting all the drama that ensued, suffice it to say this was not, I repeat not, the time to have to have these conversations, I was absolutely wiped out by all the stress of his surgery, going back and forth to the hospital, working ect ect ect.... They are so lucky they all still live. So for our sanity, safety, spiritual witness and future dealing with "Services" we will have to make changes now. And these changes are in the making as we speak.<br />
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What I have discovered is all the amazing support Bob and I have. The Church has been great, people have visited, others have donated supplies, a dear young man came and spent an evening with Bob so I could go and produce a skit for VBS. Alexander is a high schooler, he made sure Bob was served his food and they hung out together, dualing laptops, watchng old Roy Rogers serials and visiting. He's such a cool kid. I also found a blog that I am working my way through reading the last two years worth of posts.<br />
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I googled Christian caregiving and found a blog from a woman who is writing to caregiviers after the death of her husband. As I read her posts I discovered that her husband also had MSA. Wow! I really appreciate reading her posts they are a comfort and a blessing to read. She is one of the few people who truly knows what I am going through and what is ahead for Bob and I. I can't help but think that this may be one of the most valuable tools I have found to date. Thank you God for leading me to it.<br />
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The Blog Christian caregiving is listed on the sidebar- pleas go and read it, especially my fellow MSA caregivers. She is so kind, caring and a thoughtful writer, her words will bless you.<br />
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And that's our summer vacation and how we have spent it - Have a great Fall!<br />
Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-81897607136642862212012-07-06T22:50:00.001-07:002012-07-06T22:50:11.593-07:00Recapturing an Old JoyDuring the last several years every time a summer holiday would arrive I would greet it with sorrow. Bob and I had always been very active in outdoor activities. Whenever a Memorial Day or Fourth of July came around you could find us river rafting, water skiing, hiking, camping, sailing. But that had come to a halt one Memorial Day Weekend -first with Bob's Adrenal gland tumor that landed him in the ER and later the Cardiac Care unit for a week. This led to many holiday weekends that we stayed at home not knowing if we would ever have those outings again.<br />
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I remember one such holiday I just wanted to get away. Even if it meant a antiquing junket in a nearby town. I called a friend to see if she wanted to join me, but she and her husband were loading up their kayaks to go down the river. I just sat in my car and cried, mourning the loss of doing just that very thing with Bob not so long ago. I went home and did the laundry.<br />
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For awhile Bob was able to cope on his own for an overnight and even a weekend and in my job I was sent to do PR at yacht club outings to the local lakes and rivers. It was so cool to be able to get out and back on the water, but I missed my Bob. <br />
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But I am here to tell you THIS YEAR was different! Because of some of the ways we have learned to cope, some nifty gadgets, a surgery, and a new (to us) Van, Bob has become more of a traveler and adventurer again. It all started with the scooter and our trip to Port Townsend. This year for the Fourth of July we biked/scootered the Route of the Hiawatha trail. This is an old railroad route that has become a trail ride/hike. It's on the Idaho/Montana Border about 90 miles from us. We loaded up the scooter and my bike in the van and off we went- It was just like the old days - sort of.<br />
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The new van, my 1980's bike and Bob on his scooter<br />
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At the Begining</div>
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This tunnel is just under 2 miles long and very very spooky</div>
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Go Bob!</div>
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He had to stop and read every sign :)</div>
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Some of the flora</div>
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The Vistas</div>
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The Mud from the tunnels</div>
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I can't begin to convey how I felt. To be out in the woods on an adventure with my best partner in crime once again. It was the best medicine ever!!! So we had a few changes in our approach and we didn't make it down the whole trail but we had such a great time, just us, the woods and fellow adventurers we met along the way. because it is all down hill to the shuttle buses (15 miles) we had to ride uphill back (6 miles) I was very grateful that I joined a gym and have been working out this last year as I was able to manage the ride back just fine. Until the next day and I bought stock in Epsom salts.</div>
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Bob says that he had a great time too, but then analyzes how his scooter was/was not built for that and found the ultimate scooter on the Internet that would be perfect (cue Tim the Tool man grunt). He thinks we should try the Centennial Trail next time - it's paved and soo long that we can pick either a more urban or woodsy path according to how we feel that day. And it's a bit closer to us.</div>
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I know that this window of adventure will not be here to stay and could be quite short, so we are doing our best to maximize the opportunity. We have no regrets for things we didn't do as we really have done a lot, but we approach these adventures as times to savor and gather them up greedily.</div>
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We are not quite ready to pack it up and call it a day, and we are planning more places to go and people to see. sometime this summer I hope to get him out on a friends sailboat. Stay tuned for more adventures of Bob and Susan :)</div>
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</div>Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com2tag:blogger.com,1999:blog-6324126725485284042.post-87772283362559917522012-05-25T09:21:00.001-07:002012-05-25T09:21:26.201-07:00Changing RolesWhen Bob and I started out married life he was in the Navy and as a Navy wife whose husband was often out at sea in the days prior to all the electronic gadgets we have today, I was the one who handled the finances. Also Bob first became dependant for me to drive him when he had an adrenal gland tumor about 12 yrs ago and because of the symptoms he was unable to drive. so as we progressed into the diagnosis of Parkinson's and later MSA I did not need to exert control to be involved in his care, Dr.s visits, medications, finances, insurance and driving. I have heard many stories about interventions regarding driving, and being shut out of the loop regarding meds and care. Fortunately we did not have these issues. So I thought I had gotten off easy in regards to becoming the primary decision maker.<br />
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But I was wrong. Even in the best circumstances changing roles can be very difficult. Case in point - we need a different car and we found ourselves in a power struggle.<br />
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As Bob started to travel more and began to see the need for a new vehicle He started expressing his opinion. As we would travel to church and other junkets I would find myself rejecting multiple declarations regarding what kind of car we should get. I had to constantly defend my choices. I had already spent many hours on the research, Bob was just getting started. </div>
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Now I want you to know that Bob is a very intelligent man and he has some great input, but what a man wants in a car and what a woman wants are DIFFERENT. Bob is also very much a function man and not a form guy. Long ago in our marriage I had to put my foot down and tell him that I didn't care what contraption he jury-rigged up but my rule was<em> <strong>it had to look good</strong></em><strong>. </strong>I felt that these conversations were re-inventing the wheel, I had already done the research and come to a conclusion and I admit to some annoyance that he wouldn't just accept my results.</div>
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Part of this strugglei s I am begining to learn how to make these decisions on my own. There will be coming a day when I won't have Bob, with his expertise, to help, and I am begining to excercise these new skills.This is a time of transition, I am learning and he is having to let go, this is never easy and the reasons behind it greive us both.</div>
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So- the resolution has been reached.</div>
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I took Bob to see a couple of the cars I was looking at. He gets it. I no longer have to defend my choices and...... He has become a computer internet fiend (actually he always was) He spends hours looking for cars that fit our parameters and e-mails them to me, I review, reject and then make appts to go see the ones that make the cut. He comes with and we look at the car together. He feels and is part of the process and I am no longer justifying my decisions. So stay tuned to see what we wind up with.</div>
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<br /></div>Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com3tag:blogger.com,1999:blog-6324126725485284042.post-35911265985219041282012-05-10T10:08:00.002-07:002012-05-10T10:09:33.198-07:00MSA Life - Bits and PiecesSorry I skipped posting in April but life had a way of absorbing time lately and now I find myself in May.<br />
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We had lots of "Stuff" happening. In April we traveled to my folks house for a family celebration of my Mom's birthday and Easter. Bob's 18yr old cat Spike became ill and passed away. Bob traveled with his scooter on the Bus. We had a freak snowstorm that caught my out of town sister unaware, and so on and so on.<br />
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Nothing seemingly major and yet these things affected us or had some sort of impact on our lives.<br />
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The Huge thing was the cat Spike. We have had two cats (litter mates) Marlin and Spike for 17.5 yrs. We are sailors so we named them after a nautical tool used to splice rope. Marlin tended to be<br />
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my kitty and Spike was Bob's pal. He followed Bob everywhere and was quite a character. As a child Bob never had many animals and so having one get really old, sick and then reach the end of his life was very hard on Bob. I have been fairly worried about how this would affect Bob. We become so attached to our furry friends and often they will reflect our own health, secretly I was hoping the cat would outlive Bob. towards the end of March Spike became ill, had several visits to the vet, the ER vet and a few overnight stays, over a period of three weeks we waited to see how he would do. He was doing okay thanks to the meds he had received, but he had lost a lot of weight and as the meds wore off he declined even more. During this period of time Bob also seemed to struggle, it was very hard for him to see Spike decline and he tended to project the cat's health onto how he was doing and so he also seemed to struggle with his health.<br />
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After Spike died, Bob and I had many talks about him. We talked about his adventurous life and how well he was loved and loved back. He was truly a great cat. Bob has actually done better now that the drama is over and while he really misses Spike he seems to be doing better now that the stress of watching him die is over. so I am glad to say Bob has overcome and is not having any serious decline in his health that I was so afraid of. We still have Marlin, who appears to be hale and hearty so the house doesn't have a large vaccum of furry fiends..oops friends. </div>
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I bring this up because we are dealing with this disease and besides the "Disease" related stuff we deal with we often are confronted with how everyday life enters into the equation. It just takes everything to a new level and we have to be aware of how it affects us and be wise in how we handle it. Be aware - we can't always assume that "normal" stuff is benign just because it's "normal".</div>
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As some of you know Bob got a brand new scooter in Jan and it has been a really wonderful addition to the tools we have to help Bob. It was especially helpful as Bob was able to get on it and get out of the house to help distract him the day Spiked passsed away. He was gone for about 5 hours, he did </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOSIYWT-4tTQ_6GRuUeRKh6yuotifEDzeq1ss4DFLkonHB3y1G2-XrCbVhHD4GZPq4NwNf1sSjcD0Lm7w-sj1hlyqaImDETUTAc1_QZcFV1wc10pDl24o3UYpKMv-bS4OuMzPovB-nzAF2/s1600/009.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOSIYWT-4tTQ_6GRuUeRKh6yuotifEDzeq1ss4DFLkonHB3y1G2-XrCbVhHD4GZPq4NwNf1sSjcD0Lm7w-sj1hlyqaImDETUTAc1_QZcFV1wc10pDl24o3UYpKMv-bS4OuMzPovB-nzAF2/s200/009.JPG" width="150" /></a>check in so I was tracking where he was. I'm so glad he had that outlet so he didn't have to sit at home and brood. He has become very adventrous with this scooter. Recently he had a meeting he wanted to attend but I had a schedule conflict with work and the time the meeting started. So he took the Bus!!!! Oh My Broccoli! He found out that the buses would accomadate his scooter and the one that stopped on our corner would take him to within 3 blocks of the hotel where the meeting was being held. So he was bound and determined to go. I must say I was very nervous about this whole thing but had to buckup and support my husband in this. His independant spirit often challenges me and I am so glad! I did walk to the bus stop to observe the process and glad I did because this gave me comfort in knowing that the bus driver had a lot of involvement in getting him on and off the bus and because of this would be in charge of making sure he got off at the right stop. I had been worried that he would miss his stop because of not being able to indicate his choice or he would get confused and not know when it was coming up. Bob is a very smart man but this disease can make your thought process freeze, then complicated things can get really compicated.</div>
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He succcessfully made it to the meeting and I met him there later and brought him home YAY Bob!</div>
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Lastly we have been doing more traveling and have several trips planned this summer/fall. It went so well the last few times that I kind of got sloppy and as a result the trip to my folks didn't go as smoothly. I forgot some items that turned out to be very critical- not life threatening but it limited our ability to enjoy the get together because we had to struggle with certain issues. After talking to my mother-in-law about this she e-mailed me her travel packing list. She is a very organized traveler and she and bob's dad travel a lot. I appreciate her advice and help and have created a travel packing list modified for Bob's specific needs. I am also trying to have a prepacked back with things I can duplicate and have packed ahead so that it won't take me five hours to get us on the road and I won't be leaving critical things at home that can't be purchased or replaced easily.</div>
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Other tid bits - Bob had a fall in the bathroom in the middle of the night and a few days later had a very bad choking episode because he had aspirated saliva into his lungs. These are all very scary things and have pushed me to find out more about how to deal with these things. I have more research to do but I encourage all of our caregivers out there to learn basic first aid, to know how to evaluate for concussions, to help with issues that come up specific to your disease to know when to call for help and always err on the side of calling if you have any doubts. It always seems to happen in the small hours of the night and to have a plan of action helps keep the fear and stress at bay. i now I do better when I have knowledge and a clear plan on how to react and deal with things as they come.</div>
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So that was April. Hope you all have a very beautiful Spring.</div>
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</div>Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-42690945659473586342012-03-02T15:01:00.000-08:002012-03-02T15:01:19.625-08:00March - MSA Awareness month<span style="font-family: Georgia, "Times New Roman", serif;">Welcome to March which is MSA Awareness month. MSA is a form or disease related to Parkinson's Disease. Bob was initially diagnosed with PD but this was changed to MSA Feb 23, 2011 one year ago.</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;"> Definition of MSA from the Mayo Clinic:</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">Multiple system atrophy (MSA) is a rare neurological disorder that impairs your body's involuntary (autonomic) functions, including blood pressure, heart rate, bladder function and digestion. Formerly called Shy-Drager syndrome, the condition shares many Parkinson's disease-like symptoms, such as slowness of movement, muscle rigidity and poor balance. Multiple system atrophy is a degenerative disease. To see more regarding MSA follow the Mayo Clinic's link :</span><br />
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<em><a href="http://www.mayoclinic.com/health/shy-drager-syndrome/DS00989">www.<b>mayoclinic</b>.com/health/shy-drager-syndrome/DS00989</a></em><br />
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<span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-size: x-small;"><span style="font-family: Georgia, "Times New Roman", serif; font-size: small;">So this means that March is "Bob" awareness month for me and this blog.</span></span></span><br />
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<span style="font-family: Georgia;">How does MSA affect us? What is his current condition? How are we coping? In sharing these things we hope to take advantage of "Awareness" month to make you aware of MSa and Bob.</span><br />
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How it affected us?:<br />
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Since Bob was dx one year ago - Feb 23, 2011- We have had a major change in our jobs. Bob retired from his job as the manager of the mini-storage and I resigned from my job to take over his job. This allowed us to stay where we were living as he was a resident manager and now I can continue to work and still be a full time caregiver. this is the best of both worlds - I stay in the workforce and I am home with him full time.<br />
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What is his condition?:<br />
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I am fortunate that for the most part Bob is fairly easy to care for, however gradually as time has passed he has needed more and more help with daily life. Two years ago he could walk around the property, reheat food in the microwave, dress himself and get in and out of bed (although that was difficult). He was still able to manage his medications and only occasionally forget. He could still run the office, answer phones and open and close the gate each day. I could still work part time and go away for a weekend and he would be okay. He usually didn't travel with me because of the work schedule and travel was more difficult and uncomfortable for him. He was severely constipated and had developed some large hemorrhoids and so he tended to stay at home and not go out, visit friends, travel and go to church- He remained at home where he could sit in comfort and address his bathroom issues as he needed to.<br />
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MSA is a <span style="font-family: Georgia;">degenerative disease and in several ways he has lost ground and needed more and more help, but in other ways we were able to improve or learn how to cope with things in such a way that he has become more mobile and social. In the begining of last year we were able to deal with the constipation, it's still an issue but we have learned how to keep it at a controled level and know how to deal with it when it gets chronic. He also had surgery that dealt with the hemorrhoids and are now keeping them at bay. All through this disease we will encounter syptoms that while they will never be completely gone we can learn to minimize them or deal with the when they flare up. We have measures we can take to make our lives more liveable. For now. Eventually they will over take us. During the year - he had the surgery, we were given a mobility scooter, we learned about several incontenence products and installed a bidet that helps with his constipation. these items have made an amazing difference in his life. </span><br />
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<span style="font-family: Georgia;">So now this year he can travel, he goes to church with me on sundays (with his scooter), He gets out on the scooter as much as he can. We have lots of stores near us and he has "Shopped" Home Depot. Lowe's, Shopko, Harbor Frieght, Dollar store, URM, Michael's and many more. When the weather gets better he wants to try going to the VA on his scooter, I think I'll follow on my bike. Because he is able to travel now, I am taking him with me, last year we went to the Port Townsend Wooden Boat Show on the Washington coast and to his niece's wedding in Sedona, Az. We learned how to travel by car and plane with the scooter and with Bob's special needs and we had a great time.</span><br />
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<span style="font-family: Georgia;">As far as the daily stuff that I detailed at the begining.</span> He can no longer walk any significant distance, while he can get around the apartment sometimes he needs a hand because he can be unstable.His posture is bent forward due to the disease, his muscles are rigid and painful and he has lost some of his motor skills and can longer wash his hands or bathe on his own. We experienced a fall in the bathroom one night because his foot will "Freeze" and not move even while his momentum wil continue to carry him forward. this can be hazaedous when he is sleepy and wobbly- so I will usually guide him to the bathroom. For the rest of the day, unless it's a bad day, he is fine. He no longer is able to get into the fridge and reheat his food in the microwave , I need to serve it to him and then take it from him when he is done. Some foods are harder than others to deal with, so adjustments have been made, foods avoided and different utensils are used. He rarely dresses himself anymore and needs help getting in and out of bed. We are installing bedrails and a trapeze that should help him be more independant in that regard. I now have to manage his pills and make sure that he takes them and has applesauce to help swallow if needed. His voice can be soft and he will often stutter but he can still talk my ear off.<br />
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How are we coping?:<br />
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His brain is still amazingly sharp and he is very very interested in EVERYTHING! He is a joy to be around and fun to travel with I'm so glad that we get to be together now and can enjoy this time together. Every morning after we have finished dressing we indulge ourselves in the daily HUG. this can last for a very long time. It is an essential daily ritual for us. Just husband and wife, Bob and Susan. We are taking advantage of his ability to travel right now and are planning several trips this year. We are making sure that he has all the safety tools he needs so he can go adventuring on his scooter this summer. He has a mapping GPS, multiple lights (including a strobe), a loud bell and a cell phone. Weekly he has had started attending church with me on sundays and wednesdays and recently joined. He is getting to know and be known by many people there and we are starting to socialize as a couple. Spiritually we talk about this disease and what it means to us and our future. He and I are both very willing to allow this circumstance in our lives to speak as a witness and testimony for God's goodness and blessing in our lives. Please read previous posts for specifics. We are wallowing in this togetherness and are secretly pleased to be able to be together so much even while we grieve the losses we have and will endure due to this disease.<br />
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So that is our current situation or the cliff notes. I hope that this has been informative to you about what we are dealing with and how and that you have become "Aware" of MSA and Bob this month. think of us often and send up a prayer for wisdom and strength.<br />
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SusanSuper Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com1tag:blogger.com,1999:blog-6324126725485284042.post-31711680773295238002012-02-28T18:32:00.000-08:002012-02-28T18:32:59.807-08:00Recieving the BlessingsSo the last few months have been quiet, after all the business of the holidays, it's been a nice change. We haven't been motivated to do much and haven't had enough snow to write home about until recently.<br />
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Bob has been trying to get out on his scooter every day that is sunny and warm - makes me think about this spring and how much he will be adventuring. We got him a street GPS and I think I'll get him a phone he can text with. It will make me feel better (hopefully) when he is out and about. He apparently thinks that he can go to a lot of places that may be just a little too far, not safe, or complicated to get to. This spring and summer should be interesting. Youv'e got to love his spirit! <br />
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Recently I wrote about Eucharisteo, being grateful before the blessing, and I am happy to report that we have recently recieved many blessings. <br />
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After visiting the Bob's GP and telling him all about the adventures and joy that the donated scooter had provided in Bob's life, the GP figured out how to get us a brand new scooter. Now Bob is all decked out and styling . the new scooter also breaks up into smaller parts and I can get it into the car much more easily. We passed the blessing on by donating the scooter to my mom who has difficulty walking long distances. <br />
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Because of his new found mobility he has been attending church with me every Sunday and Wed, even prodding me to go on Wed's when I might have stayed at home. Originally I was concerned that having him join me at church would simply extend my caregiving duties and I would loose that time of worship and respite that I had been enjoying. I was selfish and yet worship and respite are very important for me to be able to care for Bob. Yet I didn't want to prevent him from being able to worship (and get out of the house). I was conflicted. Well it all worked out. The men at the door have been amazing in learning about our routine, getting the scooter set up and guiding Bob into a place in the sanctuary. After the service we attend different classes (a men's and women's) The men make sure he gets there and gets settled with coffee and munchies. Afterwards he meets me out in the lobby. He wanders around while I visit and has his own visits. I LOVE it!! I get to have him with me in worship and I get to relax in my caregiving duties because others are always around to help. I didn't loose a thing and I gained more than I can imagine.<br />
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Two things have happened recently at church that have just floored me:<br />
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The Sunday before Valentine's Day the sermon was about marriage. It wasn't your typical mushy sermon on mariiage and I won't expand any further on it because the best part came at the end. We usually have a prayer and an altar call at the end of each sermon. We are encouraged to turn our lives over to God (if we haven't yet) or if we have been movedto do so, to bring anything to God there. That Sunday we were encouraged to come forward for a variety of reasons. Maybe we have had some issues in our marriage, or difficulties from life that affected it or we just wanted to bring our marriage forth to lift it up to God for his blessing and to honor each other.<br />
Bob: "...go forward"<br />
Susan :"Do you mean you want me to go up?"<br />
Bob: "No I want us to go up"<br />
Susan: "Okay, move your scooter and I'll follow"<br />
Bob:" I want to walk"<br />
So I get him out of the scooter and we start to walk forward, people are begining to return to thier seats and he stops.<br />
Bob:" They are all leaving"<br />
Susan:"That's okay they will wait for us"<br />
And so we proceeded to go up to the altar where my husband took me to honor me as his wife and to seek God's blessings. There evidently was not a dry eye in the house. Pastor came off the platform and hugged us telling Bob how much he blessed him personally.Wow! All I can say is it was amazing to be a wife that has a husband who loves her, appreciates her and is willing to honor her before God and man. What an amazing moment, one I will treasure forever. I will be able to visit this memory when the times get rough, when he is gone, what a gift!<br />
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The second was that last week Bob attended the membership class and joined the church. I did two years ago and never thought that he would be able to do so also. But now on sunday morning I can check off "member" instead of "member" and "attender". It may seem to be a little thing but it helps to shore up the "Contented" column of my life.<br />
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As a caregiver I belong to a few caregiver sites and have heard or read many horrific stories of how this disease can affect relationships.This disease takes both a physical and emotional toll on the caregivers, it can destroy and warp the mental and emotional capacity of the patient. Paranoia, delusions and hostility can dominate the day to day life. Right now Bob and I do not have to battle these things and I hope we never do. I trust that the good Lord will help shield us from this. But this I know that if we do have even a little bit of a struggle or we encounter more than our fair share of it - He has given me this day to remember and to give me strength to know the truth that Bob loves, honors and appreciates me. this will comfort me and give me strength to honor him by taking care of him with love and joy.<br />
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So just as I gave thanks this fall for blessings I had yet to recieve I will rejoice in them now as I recieve them and continue to give thanks for blessing as yet not bestowed, knowing that God knows what I need and when I need them.Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0tag:blogger.com,1999:blog-6324126725485284042.post-85522828645624217852011-12-14T17:18:00.000-08:002011-12-14T17:18:39.248-08:00A Servant's heart - or Surviving being a caretakerAs you all know or have read in previous posts, my epiphany on how to have a servant's heart and pointing me on this road to learning how to be the very best caretaker Bob could ask for started with an angry shovel full of snow. I was having a temper tantrum. It was all about me and how unfair life was and then God interrupted my tantrum. <br />
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<div style="text-align: center;"><em><strong>So as I become a full time caregiver there are lots of things that I struggle with. </strong></em></div><ul><li>The first is the worry about becoming overwhelmed, suffocated and burnt out. My goal, or mission statement as it were, was to survive this time in my life in such a way that I would still be vibrant, healthy and relevant. I didn't want to be so used up that there was no life left in me and I just shriveled up and expired.</li>
<li>Secondly I want to be able to provide Bob with the best care I possibly can, so that he will be as healthy as he possibly can be for as long as he can be.</li>
<li>I want to remember to not only be his caregiver but his wife</li>
<li>I don't want to just make sure that I only take care of his day to day needs but that I care for his mind and heart and soul. He needs to know that he is precious and relevant and not just someone who has to be taken care of. </li>
</ul><br />
There have been many ways that I have learned (and still am learning) how to be a caregiver<br />
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<div style="text-align: center;"><em><strong>God has whispered in my heart with cautions, preparing me for what was coming and soothing my fears for what is ahead by promising to go before me and make a way</strong></em></div><br />
In the following years I have had to do more and more for him and we have received an even more dire prognosis that we originally prepared for. Along the way God has whispered in my heart and prepared it to face each thing as it comes. I say face because to describe it any other way would to imply that I had nothing to learn and already had the skills to "deal" with it. No I faced it as one who knows that there is an enemy that must be dealt with and begins to gather up the necessary skills and tools to overcome. I am not shocked or surprised-I had heard whispers that it was coming and when it arrived I was, if nothing else, prepared to face it and learn how to deal with it.<br />
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An example - I had almost reached my 15th anniversary with West Marine (July) it was a slim hope, but I had hoped that I could get at least that far along before I had to resign and become Bob's full time caregiver. But as Bob needed me more and more, the demands of the ministorage, the filing for Social Security and the arrival of a new store manager, it became clear that the time had come to resign. I'm often asked if it hurts or was it hard? The answer is - yes, it's sad to leave a job I loved, but no- God had been preparing my heart and when it was time I embraced it and was in fact eager to go on to this new chapter.<br />
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<div style="text-align: center;"><em><strong>I am blessed with an amazing community of support</strong></em></div><br />
As you can imagine I have received a lot of advice (and support) on how to navigate this path I am on. I have relatives who have taken this journey, a caregiver support group, friends who are both caregivers and the person who is ill. Professionals and lay people, Family and church family - all are amazing and I am so blessed to have them in my life. I welcome and am blessed by all of you. Thank you for reading my blog and bless you for the comments you make. They are an amazing encouragement to me and sometimes provide me with surprise with your insights. How you view it and how I see it are very different and I am always surprised ,delighted, encouraged and grateful that I am not alone or forgotten.<br />
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<div style="text-align: center;"><em><strong>I have been fortunate to be able to draw vast comfort and insight from the books that I have been reading in my daily quiet time</strong></em></div><div style="text-align: left;"><br />
</div><div style="text-align: left;">My quiet time each morning has a variety of books that I have been reading. It usually involves a bible study I am doing, a book that the ladies at Crossover church have found and are all reading, or one that has been given to me or I have stumbled across. Even a book about desiring God over Food book that my health and fitness group are reading through together and when I don't have anything in particular to read -good old Oswald Chambers will fill in quite nicely. I rotate them through the week and am amazed at how seemingly off topic books will lead me to such insight into my life and it's challenges. </div><div style="text-align: left;"><br />
</div><div style="text-align: center;"><em><strong>And the conclusion is it's all about perspective and attitude - that results in leaning on God's strength not mine</strong></em></div><div style="text-align: left;"><br />
</div><div style="text-align: left;">I have been following Ann Voskamp's journey of thanksgiving in her book "<u><strong><em>One Thousand Gifts</em></strong></u> - A dare to live fully right where you are". I've written about it in the post "Eucharisteo". </div><div style="text-align: left;"><br />
</div><div style="text-align: left;"><em><strong><u>Attitude</u></strong></em></div><div style="text-align: left;"><br />
</div><div style="text-align: left;">Thankfulness</div><div style="text-align: left;">So I am endeavoring to live in the now by counting the blessings and giving thanks for them - now. Ann writes "I keep on counting blessings to keep on remembering to keep on walking out into the unknown."</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">Complaints vs Laments</div><div style="text-align: left;">Learning to know the difference between complaining and muttering - very self destructive activities, and offering God a lament about the things I grieve about. "True lament is the bold faith that trusts God enough to feel and cry authentic"</div><div style="text-align: left;"><br />
</div><div style="text-align: left;"><u><em><strong>Perspective</strong></em></u></div><div style="text-align: left;"><br />
</div><div style="text-align: left;">Smallness</div><div style="text-align: left;">To make my self smaller because "How much larger your life would be if your self could become smaller in it!" and "the joy of small that makes life large" think about the feeling of smallness that we have when we stand on a rock like Half Dome - we are dwarfed by it's size and we stand in awe of it. I want the "wonder and worship" that "can only grow out of smallness."</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">Humility</div><div style="text-align: left;">Mary was humble - she was willing to put aside the dreams, plans and event the expectations of what her life was "supposed" to be to accept what God asked of her "In Mary's humility - her willingness to die to her expectations and plans - God exalts her. In her submissiveness to His will, he fills her emptiness with fullness of himself.</div><div style="text-align: left;"><strong><em><u>Putting it all together</u></em></strong></div><div style="text-align: left;"><br />
</div><div style="text-align: left;">Service and Contentment</div><div style="text-align: left;">When I do the work for God rather than for myself or for others I am filled with his strength and contentment. If I render service just to people, I can become weary and frustrated. I want recognition for what I do and start to believe that they owe me some kind of gratefulness for my sacrifice.but when I care for Bob because it is pleasing to God then the work becomes easier to do, my attitude changes, it becomes an act of worship and this is what makes me content.He will lend me the strength that I need, He will give me His joy to live this life. He will give me blessings and I in turn will bless others. In surrendering to this life of care giving I have found time and energy to invest in the lives of others. I have begun a campaign to reach out to my loved ones. The more I give up the more life he gives me. And so I no longer worry that I will be "used up" I am going to live as fully as I can now. paying attention to what He has given me and passing the blessing on to others. </div><ul><li><div style="text-align: left;">I am vibrant, healthy and relevant</div></li>
<li><div style="text-align: left;">I can care for Bob well because it is a joy to do so</div></li>
<li><div style="text-align: left;">I can separate the routine of tasks from the expression of a wife's love and be both</div></li>
<li><div style="text-align: left;">I will always let Bob know how precious, important, vital and relevant he is even in this difficult time and make sure that he has the opportunity to experience these things in the community we live in by not allowing him to hibernate in the house and getting him out as much as possible to interact with others.</div></li>
</ul><div style="text-align: left;"><br />
</div>Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com1tag:blogger.com,1999:blog-6324126725485284042.post-35048516406002444412011-11-11T15:08:00.000-08:002011-11-11T15:08:10.366-08:00Eucharisteo - Give ThanksI know that I am a very upbeat person, some would say "Bubbly" but that's not a description of a whole person. Joy and enthusiasm and all the things that go with it are like a well that continues to overflow and flood the visible parts of who I am. It's the deeper, quieter, easily overlooked parts that are actually the bedrock of me. On my facebook page I state that : I might be a bubbly person but I am also someone who likes to ponder things. I work hard, play leisurely and love God with all my might. I think the blending of both of these aspects help me to cope with Bob's disease.<br />
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As a resource for coping, occasionally I cruise thru a forum for caregivers of Parkinson's Patients. This forum is not for the faint of heart and although Bob does not have true Parkinson's they often deal with many of the things I do. It's a good reference source - It gives me more knowledge on how to handle things - like Dr's and Nurses, Surgery and Meds. I found advice on how to travel with Bob and it helped our trip to Arizona run smoothly. For example not all of Bob's necessary medications are prescription and since some of these are ingested in large amounts the liquids don't fit the category of 3oz and powders would/could be suspect. We were able to find pill forms, prepackaged powder doses and cookies that would take care of his needs and not cause the "Powers That Be" (or PTB's) a hissy fit.<br />
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Some of the posts are heartbreaking, but the others always seem to come along side to help encourage and support the struggling caregiver.Recently there was a person was really struggling and she was glad to see the honesty and struggles of others so she didn't feel so alone and inadequate. She had evidently been exposed to others that were "Little Miss Mary Sunshines". I don't know where she experienced this but I will say that there are those who seem to breeze thru this challenge and I hope that I am not one of those.<br />
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I want to be honest and real about how Bob and I are coping. Do I grieve? Yes! Do I get angry and scared? Yes! Do I get exhausted, overwhelmed, sleep deprived and become a ugly human sometimes? Yes! I fail often, and sometimes it's hard to not respond as a wife instead of a concerned caregiver. It's not always easy to tell if he's being challenged by his disability or he's just being a husband. We both wear two hats and sometimes you can't tell them apart.<br />
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So in the posts in this blog I have shared some of the deeper things that have helped me along the way, my Faith, the Word of God and the things that get Bob and I excited - the little (which are huge) victories, an inspirational song or testimony. Maybe these can help you too. But I don't want to neglect to show the hard things, it's not always sunshine and roses, and recently I have been reminded that we need to not only celebrate and give thanks for the "good" things it is very important to give thanks for the hard, even ugly things in our lives.<br />
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The word "Eucharisteo" has recently come to my attention, on the surface it means "Give Thanks". Where we see it used in the Biblical texts is when Thanks are given <u><em>Before</em></u> the miracle. If you break the word down into it's parts there is "Charis" which means Grace and the root of that is "Chara" which means Joy. So when we see a word that means give thanks that has grace and joy deeply rooted in it and it is commonly seen before the miracle - what can we say? We receive grace and joy when we express gratitude - especially in the midst of things we would not normally be grateful for. The lesson goes on to say "Thanksgiving is the bridge to Joy... from the not enough to to the more than enough. A further thought is - when are we going to not allow our circumstances to dictate how we live? Emotionally, Spiritually, Relationally? How will you choose to live?<br />
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I will choose to live as God sees fit to have me do so. As Philippians 4 says " In Plenty and in Want." For what reason, only God knows, Bob has this disease, so how will we choose to live? We will give thanks, we will be grateful. For the time we have together, for the providence of God in providing what we need. In the midst of want we have plenty.<br />
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If God had asked me to write my story it would have been vastly different. Children, comfort, long life, "The Golden Years" of retirement- we all know the dream. But that's not how it's turning out. We never could have children, we are far away from family, we live simply and will never "Travel the world" together, or grow old together. But there is a cautionary tale here. Be careful when you finite man that you are try to write the story. You might miss the very best blessings of all, miss the opportunity to change someone else's life or create something far worse than you are experiencing now. A King of Israel as he was dying was granted his wish to live and he was given another 15 years. He had been a good king but in those last 15 years he made mistakes and failed badly and sired a son who was to become known as the very worst King that Israel ever had. I believe I'll let God continue to write my story, He has a much better vantage point than I do.<br />
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One last thought - What good is it if you give praise and gratitude when things are going well? If you die or sacrifice for someone you love? Isn't that expected? As it should be? How much more valuable is it to be thankful and joyful when life sucks? To be grateful when hard things happen, to find joy in the midst of hard things, to sacrifice for the unlovable? In expressing gratitude in the midst of pain, hard, grief and want we recieve God's Grace and Joy and we can choose to not allow our circumstances to dictate how we live.<br />
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I live a hard life. He's dying. I work hard. and am required to perform unmentionable tasks. And I will rejoice that I am able to Love him, Care for him, Be with him. I will rejoice that we are going on our 34th year together and I am so vastly thankful that I know that when he leaves this earth he will be in the presence of God. You have no idea how much gratitude I have with just that one thing.<br />
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We hope you have a wonderful Thanksgiving and that when you give thanks for all the blessings that you have, all the good things you can name, remember the hard things and see how they can also bless your life and give thanks for them also. Practice Eucharisteo.<br />
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Susan<br />
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note: The lessons regarding Eucharisteo have come from 1) Ann Voskamp's Book "1,000 Gifts" and readings from 2) Oswald Chambers "My Utmost for His Highest" and 3)Teachings from the Women's ministries at Crossover Church in Mead, Wa - I have blended them all together and posted my combined "Take away"Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com2tag:blogger.com,1999:blog-6324126725485284042.post-60997928792473281402011-10-04T17:53:00.000-07:002011-10-04T17:53:35.288-07:00Am I a Hard Hearted Hannah or a Wise Woman?Last Thanksgiving Bob's Niece became engaged to be married. They planned the wedding for the following October in Sedona Arizona. Bob had strong reservations about going.<br />
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To be fair he had a condition at that time that was severely limiting his ability to even leave the house and our ability to afford such a trip was non- existant. But I told everyone that if it was humanly possibly we would be there. <br />
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Well he had surgery and his quality of life was much improved. We started taking him out to do things that we had always enjoyed. The first outing was with some friends, we went to Bayview Idaho on Lake Pend O' Reille to view the fireworks. This had been a family tradition from back when the kids were really small and Bob had missed it for several years because of being ill. Robin and Diane made sure that Bob knew that they cared more about spending time with him that what condition he was in. The message started to sink in. The next week a customer gave him the gift of a mobility scooter, which, as any of you who know Bob will not be surprised by, he promptly took apart.<br />
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<tr><td class="tr-caption" style="text-align: center;">He even painted the motor housing<br />
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<tr><td class="tr-caption" style="text-align: center;">He had me painting the Body</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguLTavaQNRuNOrcYjhuB0bE8FcMTeAacxFCc0yjLIccZWjQZ8SgX6j4wcIVBgEWdAKRSE5farm6vCD-7D9Z6WqVkOc3QrGGyaKdq3M4FxmZe19rwtIu2GK1I51OKeEvmh4JJAYEfxWa6ZL/s1600/013.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguLTavaQNRuNOrcYjhuB0bE8FcMTeAacxFCc0yjLIccZWjQZ8SgX6j4wcIVBgEWdAKRSE5farm6vCD-7D9Z6WqVkOc3QrGGyaKdq3M4FxmZe19rwtIu2GK1I51OKeEvmh4JJAYEfxWa6ZL/s320/013.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taking it for a Spin after it was put back together</td></tr>
</tbody></table><br />
This was a wonderful gift and is one of the items that has had the biggest positive impact on his life since he became disabled. When one has a project like this it always works best if you have a deadline, so I made the Port Townsend Wooden Boat Festival our deadline.<br />
<br />
Here's how the Hard Hearted Hannah comes in. He was intrigued enough with the scooter that he was willing to accept the festival as the deadline to get the scooter in working order. However he did fuss a bit and tell me he was relunctant to go. I further told him that it would be a dry run for the big event and that would be the wedding in Arizona, to which he flatly stated that he was unable to go, to which I would reply "We'll see". And so it went, repeatedly. He fussed and I held firm.<br />
<br />
Now I totally understand his position, We had never taken such a huge trip since he had been ill and he is embarassed for people he knew when he was healthy seeing him in his current condition. He is very uncomfortable and sure that people will have a negative response. I knew for certain that he needs to get over the embarassment, that those who love him want to see him and I will not allow him to become a hermit. I was unsure that we would be able to handle the trip, so keeping in mind that it could be a complete disaster I did promise that he would never have to do it again.<br />
<br />
Gradually the trip to Port Townsend arrived, the scooter was ready and away we went. While he was relunctant to see people he hadn't seen since he became ill, the trip wasn't too long for him and the lure <br />
<div class="separator" style="clear: both; text-align: center;"></div>of the sea and wooden boats called him. We also had the help of our friends Trudy and Jeff. So the trip to Port Townsend commenced.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrDffUE8XDfnGDbMXi2aNCkANmDvHqc7lM30DEtWju-BYlRwmUVw6K6s-StSipZt_nI_PU4itGUlLqhOKn8YWhPCy4bHjcLi_nw4tzsonQFtf5xceM1rf_TyZChH6uYAVeFz9kFSJOwrZX/s1600/023.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrDffUE8XDfnGDbMXi2aNCkANmDvHqc7lM30DEtWju-BYlRwmUVw6K6s-StSipZt_nI_PU4itGUlLqhOKn8YWhPCy4bHjcLi_nw4tzsonQFtf5xceM1rf_TyZChH6uYAVeFz9kFSJOwrZX/s320/023.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We set him up with his laptop in the back of Trudy's Yukon and loaded up the scooter behind us<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmBb8cOhNFyYYd8masbMUm_d8ZEIBhBVi0I3VBzzmFUEwkamMkgxqkS3Bqw6aqlvh9Tdaj5_Gij5zE7KyDAADvIgTGDSrliAgVY_7Cb78eAQA0bueCzEXM1a0KPlFhv2wPGd0qelXXc5e5/s1600/081.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmBb8cOhNFyYYd8masbMUm_d8ZEIBhBVi0I3VBzzmFUEwkamMkgxqkS3Bqw6aqlvh9Tdaj5_Gij5zE7KyDAADvIgTGDSrliAgVY_7Cb78eAQA0bueCzEXM1a0KPlFhv2wPGd0qelXXc5e5/s320/081.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He got so confident with the scooter the secound day that he ditched us<br />
we later found him at this seminar<br />
</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWoUqXp2xu7QYoJCyMnosJXp_oW8kIbXbI89oevsVGqmZ43YtZQuPZrJ-MYU7DCQWm1sljLfJ7U-Za5TZo2efxwAi55ov-Wauh1_U1Ebv7PewZ1PjFFScxIKNVahY_Lzdc5XQ_kdYSgNH1/s1600/085.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWoUqXp2xu7QYoJCyMnosJXp_oW8kIbXbI89oevsVGqmZ43YtZQuPZrJ-MYU7DCQWm1sljLfJ7U-Za5TZo2efxwAi55ov-Wauh1_U1Ebv7PewZ1PjFFScxIKNVahY_Lzdc5XQ_kdYSgNH1/s320/085.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It was a very sucessful trip<br />
</td></tr>
</tbody></table>We learned a lot on that trip, so I put a lot of time in thought and preparation in planning for the trip to Az. He still did not want to go but I held firm and he finally gave in. He was really very nervous about all the aspects. His list of worries went like this:<br />
<br />
<ol><li>It's not safe for me to go on an airplane I could catch a cold from someone and it could kill me</li>
<li>My family will be shocked by how I look, I don't want them to see me this way</li>
<li>This is too far, too hard and too expensive.</li>
</ol>and so it went.<br />
<br />
But I held firm and told him he needed to go<br />
<ol><li>They loved him and this was an important event</li>
<li>We learned a lot of thing on the Festival trip that will help us on this trip</li>
<li>He would break Michelle's heart (He said this was playing dirty)</li>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiApwyOSMwHlik6XGi5gEMquhiq0CBWmreQH4n4oFDKfLq3VTltIMmX5G_TQS9motLHxo8Rd-tZjPy6HuJoWLf1YzXUBExiAzMeiCgh0vV6s67tSJ7s2BkPUIdzfQvNtQYiMK_UI29ckIII/s1600/118.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiApwyOSMwHlik6XGi5gEMquhiq0CBWmreQH4n4oFDKfLq3VTltIMmX5G_TQS9motLHxo8Rd-tZjPy6HuJoWLf1YzXUBExiAzMeiCgh0vV6s67tSJ7s2BkPUIdzfQvNtQYiMK_UI29ckIII/s320/118.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All three nieces came to the hotel to walk thier Uncle Bob over to the Resort<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaDdopf4hLZTW7taB26Wzcz-aVVkdU_tEeGgp9VQ7Z3SzxDr_h2rl4Iem9kFLDEHQ5BcejDXfF7BXi8uIUtusGRiqr8_jmJU3MTa9VwhXfnkLOOSKv5rjc8EB32vb7Zj8nxhw9Yfb0TdRt/s1600/119.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaDdopf4hLZTW7taB26Wzcz-aVVkdU_tEeGgp9VQ7Z3SzxDr_h2rl4Iem9kFLDEHQ5BcejDXfF7BXi8uIUtusGRiqr8_jmJU3MTa9VwhXfnkLOOSKv5rjc8EB32vb7Zj8nxhw9Yfb0TdRt/s320/119.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He was never ignored all weekend<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYdWsXXliY-rwhhsK_09-MazkmMrB9pSNFP4vmhq0ofbtPYrpgOnt9-zBgnAhydXKSR21LU8GonuOK776GE2LmGzhAsXCnQDHr65znGp5QlI1rzsEdMkQTxYLX33R3fIdkroTiyaNDy0Pr/s1600/146.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYdWsXXliY-rwhhsK_09-MazkmMrB9pSNFP4vmhq0ofbtPYrpgOnt9-zBgnAhydXKSR21LU8GonuOK776GE2LmGzhAsXCnQDHr65znGp5QlI1rzsEdMkQTxYLX33R3fIdkroTiyaNDy0Pr/s320/146.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The wedding was beautiful<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSJGUNe5j9nhXCPg6qavCZeEU_Gu4if1n_iys-TFJibqyP1Ljy9fpDByzNvAQGjNP3D9uIIOb68zynaanO4xbquEKkc7dc9eTMPxnKNFZqgaxgx-HLqHruzdeuJnjT0SdBWnZEriaLYed8/s1600/162.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSJGUNe5j9nhXCPg6qavCZeEU_Gu4if1n_iys-TFJibqyP1Ljy9fpDByzNvAQGjNP3D9uIIOb68zynaanO4xbquEKkc7dc9eTMPxnKNFZqgaxgx-HLqHruzdeuJnjT0SdBWnZEriaLYed8/s320/162.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And the Bride was thrilled to have him there</td></tr>
</tbody></table><br />
He had a wonderful time, and we both had a terrific vacation. I had forgotten how much fun he could be to travel with and It was so much more fulfilling to go a share things with him than to go by myself and then try to tell him about it. He even went four wheeling with me through the Red Rock country.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidL2_F-12GlRzAg7LfErS_cO1paRVLjaUMvCN-3VBq_NiLBcu1cbkzshBKrzXlmkvfq_t1h7h871jGM-yfx4lyaJzbedI0zu6givgWSG-TugoGrAK1gvCv1I2N-TETACARHCwroE573TnQ/s1600/264.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidL2_F-12GlRzAg7LfErS_cO1paRVLjaUMvCN-3VBq_NiLBcu1cbkzshBKrzXlmkvfq_t1h7h871jGM-yfx4lyaJzbedI0zu6givgWSG-TugoGrAK1gvCv1I2N-TETACARHCwroE573TnQ/s320/264.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We dared to take the rental car</td></tr>
</tbody></table><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN_ulDwiRT__iEnhbLN_PaD_4A1cPV2KV67mMCQbHKMZZcAYnfoTh_e23YXrR3L_8AZlXh1OOIfkR5Ue0BUwnlW7rFglG8UAV9za1DOA3UQ_Ek7ObA8z0UHiH-aI4RyDpC_yj_Mkvlc-7g/s1600/274.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN_ulDwiRT__iEnhbLN_PaD_4A1cPV2KV67mMCQbHKMZZcAYnfoTh_e23YXrR3L_8AZlXh1OOIfkR5Ue0BUwnlW7rFglG8UAV9za1DOA3UQ_Ek7ObA8z0UHiH-aI4RyDpC_yj_Mkvlc-7g/s320/274.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The scenery was amazing and we got to see it together</td></tr>
</tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1RieFmAASD6VC5BpUyOYzhjrdMdPQ-6EvZrSTr0zZqLD_g1BvmjWyhrGzCl-oMbR4cNbrNx2NB8OTdoqNmBjDtl6ZJq8uDQtKlHCRTL568JhzagboaJLjo0_oXYRf-hL-Sh5qMpMXgEiZ/s1600/287.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1RieFmAASD6VC5BpUyOYzhjrdMdPQ-6EvZrSTr0zZqLD_g1BvmjWyhrGzCl-oMbR4cNbrNx2NB8OTdoqNmBjDtl6ZJq8uDQtKlHCRTL568JhzagboaJLjo0_oXYRf-hL-Sh5qMpMXgEiZ/s320/287.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The reason he's so fun to travel with- we get to see things most others don't<br />
He was invited into the cockpit during a layover</td></tr>
</tbody></table>So why did I call this title this blog "Hard Hearted Hannah" ? Because even though I was endeavoring to do what was right for Bob, to push him when he needed pushing, I occasionally worried that I was so involved in making him go that maybe I was missing something and He really shouldn't go.<br />
It's again that balance thing. We are constantly walking that fine edge of what is good for him and what isn't. Always I keep it in my mind, I try to keep a backup plan so that if it goes south we can deal with the emergency. At one point he thought he was having a gall bladder attack (it was possible) and I had to research what we needed to do if he needed to go to the ER in Sedona.<br />
<br />
In the end He had a wonderful time and even conceeded that since he was doing better than last year (in the ways that count for a trip) he might be willing to go on another trip. I am so glad I stuck to my guns and so very glad that it all worked out wellSuper Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com1tag:blogger.com,1999:blog-6324126725485284042.post-83677395320428772011-08-28T21:42:00.000-07:002011-08-28T21:42:24.198-07:00Rough weekSome weeks are filled with discovery, others just day to day stuff and then there are weeks that have significant milestones. MSA progresses much faster than Parkinson's Disease, however both have stretches of status quo and periods of dramatic change. Neither progresses in a manner that you can say- Oh! we have moved into the next phase. Every patient has a mixed grab bag of symptoms.<br />
<br />
I go regularly once a month to a care giver's support group and between the combined knowledge of the group I learn about a lot of things that we could be facing. I could let this freak me out, but because it is a group I have learned that everybody has a different reality and that he probably won't get all these things. What helps is that when something does happen I can see it and know why it happened. This brings me to the first thing this week.<br />
<br />
#1 - Bob fell. Let me allay all fears - He is fine and didn't have to go to the ER. It was the classic middle of the night, had to go the the bathroom fall. Because he hit his head (and has a small gash) I called 911. I have decided that I am not messing around with his care If he had fallen on the carpet and didn't appear to have any problems I'd have hefted him up checked him out and let it go. But 3am, head and blood - I call the paramedics. I always look for the benefits in a situation and even in this I can see it. The Fire station is across the street from us. I have previously gone over and made a report about Bob so they would have a clue. The minute I called they knew who and where we were (and not just because it was on their screen).<br />
<br />
The Benefits? - They got to meet Bob and asses him personally. They got a look at the apartment and realized the challenges they would be facing if he had needed transport. Besides the non accessibility of the apartment you don't want to bring the Firetruck into certain driveways between buildings, so they learned how best to arrange the vehicles. Believe me they were actively inspecting options because... They knew they would be back. And that was the hard thing. They will be back. Fortunately this was a relatively minor incident and so we were able to make the most use out of it. Oh and Bob was really impressed with the treatment he got and less likely to be reluctant to ask for help when we need it.<br />
<br />
The next day Bob and I talked about it. Why did he fall? He told me that as soon as he entered the doorway his leg stuck or "Froze". Because of the support group I knew that often doorways present a challenge to PD'rs. For some reason they often freeze in doorways and because he was hurrying he still had some momentum and when his leg froze he could not recover and he went down. So we talked about ways to help cope with these kind of situations.<br />
<br />
So tough thing #1 coping with falls, having to call for help and realizing - this is just the beginning.<br />
<br />
#2 - My parents are getting older and it is never a good thing when my sister calls on a Sunday afternoon. My mom is currently staying overnight at the hospital for tests and observation. She's fine for now but she was having significant chest pains and they aren't playing around. Prognosis? - Likely a change in meds possibly a procedure. Appears to be an early thing that detection will prevent a more serious event.<br />
<br />
I must say that my sister is an awesome guardian of my folks and I so appreciate that I can count on her to manage their situations while I focus on Bob and I know that when it's imperative she will let me know if and when I need to come to Portland. I could feel guilty about being so far away - but I need to look at it as - we are a team and she is doing her part and I am doing mine and when we need to consolidate - we will. I thank God for siblings who are so competent and easy to work with. Well behaved, well loved and loving God what an awesome family to belong to!<br />
<br />
#3 - this one is subtle and because he doesn't read this blog I can express my concern here.Memory is a very complicated and multi layered thing. He has never had a great memory for stuff like names, and short term things ect. He has a photogenic memory for his profession. In his mind he can project on the wall any schematic he has ever seen. That's one of the reason's why he is so good at fixing things. This is why I nurture his computer addiction and why we benefit as much as the people who bring their computers to him. It's his therapy, it keeps his brain working and uses areas of his memory that are firmly embedded in his brain. By the time someone is diagnosed with Parkinson's and then later MSA there is a neurological loss that can be up to 80 percent.<br />
<br />
<br />
<br />
So - it's been a tough week but it's also been filled with the Love of my community and God's people. I had some wonderful times of recharging and respite with my Ladies bible study. I received some recognition for a huge creative project I did this summer that was unexpected and flattering to be so recognized. And several people have told me that they appreciate me and my testimony as a caregiver for my husband. It always amazes me how other's perceive me and it's nice to know it's not as bad as I would think :) Sometimes their perspective is something I hadn't realized and it can be enlightening to see a different perspective of yourself.<br />
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God provides the nourishment that I need as I travel this earth and I will continue to hold on to his hand, put my roots deep into his everlasting water and live the best life that I can and hope that it brings praise and glory to him.Super Suehttp://www.blogger.com/profile/04153576115919313059noreply@blogger.com0