tag:blogger.com,1999:blog-45606530150573572282024-03-13T23:00:03.091-06:00Today I Feel Exceptionally....Unknownnoreply@blogger.comBlogger224125tag:blogger.com,1999:blog-4560653015057357228.post-55603690995415376542017-03-29T22:39:00.002-06:002017-03-29T22:39:49.703-06:00healthy - resolved/the endWhat wonderful news I can give you - I have no symptoms of Lyme disease or co-infections. Last month I had my final appointment with my doctor and while I didn't know that it would be my last going into it, I had a pretty good feeling that it might be because of just how I've regained health over the last year. My physical exam and health report were received very well and as a precaution (because of JUST how aggressive and enduring my infection was), I will continue on a very minimal dose of antibiotics once a month until July. Then, I'm done. But honestly, it does feel all finished now, because even that once a month tiny dose of medicine doesn't end up causing any symptoms to flare and my daily life is completely back to normal - no lingering symptoms at all!<br />
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I'm still adjusting to having a fully functional physical body! I am daily still in awe and thankfulness that God would restore my health and I love feeling normal again. I feel even better than I did before all of this sickness really took hold! Can you imagine? Having a sharper mind in your 30's than you did in your 20's? And instead of feeling the effects of age on your body, you feel more physically able and fit than you did in college? Amazing.<br />
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Because of so very many years of being bedridden and just not using many of my muscles that often, I've had to ease into activity. My body WANTS to do more than I let it right now because I've learned the hard way over the last 6 months that if I do as much as I feel I can, the weak muscles revolt at the end of the day with spasms and soreness. I'll clarify to those of you who struggle with fatigue and joint pain -- this pain is NOT that! It's the good pain of muscles being utilized and being trained.<br />
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Spiritually and emotionally, I am so relieved - so thankful - that this particular trial is over. How difficult and how absolutely stretching was this trial. At times I felt like a bow and arrow being stretched and stretched, nearly <i>cracking</i> because it couldn't be stretched anymore, and yet God stretched MORE, not yet ready to release the arrow. And I will tell you, the Lord made me stronger through it.<br />
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I think the ultimate questions you can measure your trial with are very basic beliefs you have about God. Before your trial was afflicted, you believed certain things about life and about God. During your trial, did/do you still believe those things? Were they proven true? That is the true gauge of whether your beliefs and/or the God you believe in is dependable. So here are a few that I continually asked myself during those very long, arduous 9 years of torment and distress. Working my way through TOUGH theology brought me closer to God than had I tried to emotionally go to a place pursuing what I felt would somehow refresh my heart but would have been just a Bandaid, quick-fix to a hurting heart and mind. Wrestling through <i>doctrine</i> of the faith has always, always proved that the Holy Spirit is given to comfort and assist. Was God who He says He is? <br />
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<b>1) Is God Faithful?</b><br />
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<i>“Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments." Deut 7:9</i></div>
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<i> “No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so you can stand up under it.” 1 Cor 10:13</i></div>
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<i>"Your steadfast love, O Lord, extends to the heavens, your faithfulness to the clouds." Psalm 36:5</i></div>
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God never forgot me, failed me, or ever faltered in His care for me. He could be safely relied upon. Cherished hopes and dreams for my life were essentially shattered, though. I often thought, "I have just <i>lost</i> 5 years of my life",..and then six, and then seven, and then eight, etc. The self-pity and wallowing were a real thing at times. The encouragement and change of heart attitude came when I dwelt on God's faithfulness and <i>begged</i> for His mercy to deliver me. My brain was so affected by bacteria a lot of the times that I couldn't think straight and couldn't wade through simple sentences. There were many times that I lay, incapacitated, writhing in pain and physical misery and helplessness that the only prayer I could utter was a steady stream of repeated, "Help me, help me, help me...." In those very basic words and stripped bare, the Holy Spirit was proving faithful to intercede FOR me when I couldn't even express what I needed (Romans 8:26). The Holy Spirit knew what to ask the Father when I didn't even have words or thoughts for what I needed and those prayers the Father was pleased to answer. </div>
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I often worried that my kids would be affected in a negative way by not having a mother who was fully present in their life. I don't just mean that I wasn't doing extras in their little lives - I mean I was locked away so very often that interaction was very minimal. There were even periods when others had to take some of my kids for extended durations of time and my heart broke. But God was trustworthy - He held my family close and grew my children and used others with like minds to help in the shaping and raising. They aren't LACKING as I feared and in fact they are stronger for having observed such acute suffering and experiencing the outflow of it on their own lives.</div>
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And let me be clear, my faithfulness to God throughout these hard years was not by self effort. Please don't make that mistake in believing that I tried so hard to be godly and faithful and that I succeeded. I was not faithful by my own resolution; ONLY because God strengthened me and because He made me faithful and gave me fortitude to endure did I make it through suffering not bitter and broken, but content and whole.</div>
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I could go on and on with example after example of His faithfulness in my life through this trial.</div>
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<i>"The steadfast love of the Lord never cease; </i><i> his mercies never come to an end; </i><i>they are new every morning;</i><i> great is your faithfulness." Lam 2:22-23</i></div>
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<b>2) Is God Sovereign?</b></div>
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<i>"As for man, his days are like grass;</i><i> he flourishes like a flower of the field; </i><i>for the wind passes over it, and it is gone,</i><i> and its place knows it no more. </i><i>But the steadfast love of the Lord is from everlasting to everlasting on those who fear him, </i><i>and his righteousness to children's children,</i><i> to those who keep his covenant </i><i>and remember to do his commandments. </i><i>The Lord has established his throne in the heavens,</i><i> and his kingdom rules over all." Psalm 103:15-19</i></div>
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<i>"And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ." Phil 1:6</i></div>
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<i>"He is before all things, and in Him all things are held together." Col 1:17</i></div>
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<i>"I know You can do all things, and no purpose of Yours can be thwarted." Job 42:2</i></div>
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The one question that I got asked the most frequently (and if not asked, then stated in people's observation of my suffering) was, "If God is good, why would He inflict you and not deliver you for such a long time?" I do admit, this is one of the harder things to wrap your head around.</div>
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Did He allow this affliction to be put upon me? If so, does that make him any less good? My answer - yes, He allowed it, and no, it does not make Him any less good. The fact that I suffered but prevailed having learned and grown closer to Him, not abandoning my convictions and belief in who He is, is proof. He is so far greater than me, so far above me as Creator and Ruler, that as a human being, I would much rather choose to trust in His sovereign plan in my life because I know He has my best interest in mind. We aren't promised that we will always have a clear picture of the WHY, but when you accept His rightful place in the orchestration of your life, you are given peace abounding. And when I look back over the last 9 years, each strand of anguish had a very fitting place within the tapestry of the life that He is weaving.</div>
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If you do not believe in His sovereignty, then your God is too small and you've relegated Him to be some sort of jolly father figure who sits back and observes but is not active, powerful, and far greater than any person can comprehend. You do not have a good grasp on His supremacy, authority, and role as infinite ruler. And yet, what kindness and mercy and grace He shows that such a powerful God would be intimately involved in each of our lives? His love is so vast and great toward us (who are created in His image!) that He would make a way for us to have a <i>relationship</i> with Him - by giving us Jesus who made a way for us to interact and dwell in His midst without consequence. Jesus took the full weight of the world's sins (which were the thing in every human that separated us from having fellowship with a holy, pure God) on himself at the cross, conquered death through resurrection and said, "Here, have this gift not only of eternal life with God, but of fellowship with Him as well." Does His sovereignty over my life make me resentful? No! Dear readers, His sovereignty is a place of rest and cause for worship!</div>
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<b>3) Does God give grace?</b></div>
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<i>"For from his fullness we have all received, grace upon grace." Jn 1:16</i></div>
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<i>"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." 2 Cor 12:9</i></div>
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<i>" and the grace of our Lord overflowed for me with the faith and love that are in Christ Jesus." I Tim 1:14</i></div>
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Grace is unmerited favor of God, and we see this not only in the salvation of sinners but also in the bestowal of blessings in our lives. I by no means acted sinless through my suffering. I didn't always have the right attitude. I shook my fist, I doubted, and I wanted to give up on more than a few occasions. Endurance was not something I wanted, but endurance is what God gave me and what healed me. Put another way, God's perfect patience, or His restraint shown in the face of being incited was to exhibit His grace even more. He allowed my times of doubt and anger about what He was doing in my life so He could display His patience and grace even more clearly to me.</div>
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He showed His undeserved grace in other facets of my life during my suffering as well. Little blessings here and there that I never thought I had earned or deserved, but were much welcomed and appreciated. Look at every way He worked and delivered me, and know that it was all by His doing. We should be prepared to humbly accept the sun <i>and</i> rain. Should I thank Him during days of sunshine but then turn around and fuss and groan on the rainy ones? Trust Him only when He showers bounty and He seems close, and then turn my back when He allows discomfort and I perceive Him to be distant? His grace was overflowing, pouring out and over like a roaring waterfall into my cup and I cannot look back over the last nine years and NOT clearly see that. He certainly deserves praise!</div>
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Don't grow weary, then - endure, but know that you can only endure by His help.</div>
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My most frequent prayer over the last nine years was not for healing. Are you surprised? My deepest and longest running prayer was that I might <i>glorify</i> Him through my suffering. Asking that God be glorified through my illness was the most rewarding prayer. That was a prayer the Holy Spirit heard and rejoiced in and brought straight to the Father. Asking for healing was something I definitely did, but asking with the truth and attitude of "if it's Your will..." kept me largely from doubting His faithfulness, sovereignty, grace, or goodness. And I pray the same for you in whatever trial or suffering you may be experiencing today.</div>
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Thank you for keeping myself and my family in your constant prayers over these trying years. We are so very grateful for those of you all over the country that poured into our lives when we had no other help. The physical sacrifices you made, and the love that you showed surely modeled God's desire for us. We will always be thankful for you.</div>
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I don't have plans to keep writing on this blog as it appears this health journey is finally at a close. Thank you for staying interested and keeping up with your encouragement! I hope that some part of my story over the years has been of some encouragement to you. I'm still here for questions (click on the "contact me" link), especially those of you who have specific questions about what all was involved in my healing. In short - my doctor was very wise and really knows how to attack this disease. Keep at the healing process and don't lose heart! Those of you dealing with Lyme need to endure during the hardest moments of your life! It is the key to getting well. Prayers for you all.</div>
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-Heather</div>
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<br /><div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560653015057357228.post-22802609038990742202016-11-24T12:21:00.000-06:002016-11-24T12:21:59.543-06:00gratefulI've been silent - so much has happened since September! Part of it was me enjoying being more mobile, having more energy, and living life. Part of it was relishing a joyful surprise, even though it physically took a toll on me - I was just so glad it wasn't Lyme ailing me.<br />
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But in the last two weeks, our family has suffered much sadness and I have been afflicted with what was a "fluke" (named by my doctor) series of medical incidents. And I've been forced to spend a lot of time back on the bed and couch out of necessity to heal up properly before I can get back on with a more active lifestyle that I had started to really become accustomed to again.<br />
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Back in September, we were blessed with the news that I was pregnant. Our whole family was so excited and we all couldn't help but wonder what this surprise of a blessing would bring next year. I was struck immediately with quite intense morning sickness...or really "all day" sickness which is quite typical for me when pregnant. But despite all of the throwing up and generally ickiness of feeling that way constantly, this time was so much different than my other ones because I actually maintained so much energy. We have been so pleased with how it appears I am really recovering fully from Lyme disease and I don't take a day for granted.<br />
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Even that numb area on my ankle and foot cleared up finally, just as my Lyme doctor has predicted. It was great to finally be rid of that neuropathy! We enjoyed a family road trip and camping that was so very refreshing, especially with all of the Fall weather! I also got to take a short little trip with my husband which was so fun since it was just him and me.<br />
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And then - I went in, yet again, for another routine OB checkup, and nearing the 2nd trimester, baby had no heartbeat. I've got a handful of babies in heaven, but this time was only like one other more than 6 years ago where I was a bit farther along, AND, my body didn't do what was in its nature, and I needed surgery to take care of things.<br />
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The surgery went as planned and I'm so thankful for a wise doctor, because I went home that day and began to recover, only to wake up about a day later and be in very intense pain. My OB told me to go to the hospital immediately because the pain was in my lower abdomen and after surgery, this was not normal. The pain was so awful that I couldn't walk and had tears streaming down my face for hours as they tried to manage it and figure out what could be wrong. I had been told many years ago that my gallstones were the worst pain I would experience - I guess they didn't count on this happening to me, because this was by far more painful.<br />
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It was finally determined that I had an enormous blood clot in my uterus - most likely due to a clotting problem that I never knew I had. I was taken into surgery and SO much blood was removed and my pain was relieved. But this was the 2nd surgery within four days and no body just rallies immediately back from that. I spent one night in the hospital so they could observe me and was able to go home the following day. I tried to rest as well as I could to fully recover, but after just one more day at home, I woke up in pain once again.<br />
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I called my OB immediately and was told to come into the office. What could possibly be wrong this time? My OB has so many years of experience and said that this was something he had never seen. After examination and a test, he could see a lot of blood on top and behind my uterus. He said he needed to go in and figure out what was going on. He said this had nothing to do with my miscarriage or the blood clot.<br />
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I was rushed into surgery yet again, this time a bit more invasive and he found a ruptured ovarian cyst as well as another semi-fixable issue. After surgery he was so kind and said this was like lighting striking and he really hasn't seen anything quite like it, because all three of my surgeries that happened within days of each other were not really related and most definitely a "fluke" kind of thing. I was so happy to be out of horrid pain.<br />
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I spent extra time in the hospital to ensure that I was really on my way to healing this time and went home with strict instructions to ONLY rest and taking small walks as tolerated. It would be a slower and more painful recovery.<br />
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I'm thankful for the encouragement that God provided, both through His Word, and through our friends. We were immensely grateful to those that visited us in the hospital and stayed to encourage even though I know it must have been a bit uncomfortable as I was really having a rough time, even after the surgery due to some recovery complications. We relished those prayer times with people who cared for us.<br />
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Now, readers, you might wonder how or why on earth I could be grateful right now when such sorrow and pain has afflicted us recently. Yes, our whole family mourned and we are moving forward with a little bit of heaviness weighing on us. It was extremely sad and so many family dynamics needed to be cared for as it related to everything that happened. But God has been so faithful to really put joy and gratefulness in all of our hearts despite the moments of sadness. <br />
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I'm thankful for little things like the continuing overall health that I still have - that I'm able to take my kids on walks without getting fatigued. I'm grateful for resilient children who have bounced back and adapted so well during this season. I'm thankful for a devoted husband who loves me so much and cared/cares for me when I need it most. I'm also grateful for more profound things, like God's faithfulness to supply and sustain us in our endeavor to <i>endure</i>. I'm so appreciative of Christ's death on the cross, because not only did it purchase ME, but it purchased my ability to endure hard things. I could never do it on my own.<br />
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<i>"If we endure, we will also reign with him."</i> </div>
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2 Timothy 2:12</div>
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The energy we have to endure is supplied with the strength God provides us, and this is the reason I am able to be grateful for so many things right now during this (hopefully short!) season of hardship.</div>
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Well, I must get back to resting up and healing. I do hope to still write, but I'll confess that being more active has really taken me away from having much time to sit in front of the computer. This is a good thing! The game plan is to continue on with finishing up my Lyme treatment and praying that it won't be too much longer. But I'll tell you - it thus far has been so much easier than it ever has.</div>
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Happy Thanksgiving!</div>
<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560653015057357228.post-10875339418370406122016-09-02T21:27:00.004-05:002016-09-02T21:27:59.138-05:00out of the ashesToo afraid to write about it, for fear that my health would somehow decline if I spoke the words, I've stalled writing about my appointment with my Lyme doctor in August. But as always, this is silly. I'm not superstitious; also I think part of it was me enjoying the news I received and just how good I've been feeling.<br />
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-iKnPQ9wr47s/V8oz14DU_WI/AAAAAAAAY-s/iLnImGs_fC4QUFw35yGmJZ39rOByzjmbgCLcB/s1600/hike%2Bm.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-iKnPQ9wr47s/V8oz14DU_WI/AAAAAAAAY-s/iLnImGs_fC4QUFw35yGmJZ39rOByzjmbgCLcB/s320/hike%2Bm.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just went on a 2.7 mile hike and was<br />fine! I'm beginning to enjoy<br />camping again!</td></tr>
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Let's talk about my foot first of all. As of this week, I'm officially "graduated" from physical therapy and plan to do a lot of the exercises at my local gym to keep in shape in general since I know how much exercise my body can handle and to keep my foot moving to hopefully re-fire all the nerves down there. The size of the numb area has shrunk in the last week and a half which is really good news! According to my Lyme doctor back in mid-August, it is quite common to have numb areas in the foot or toe in Lyme patients. The receptors in your brain have a ways to travel down to your foot and they explained they see this quite often. Probably my nerve/s got ticked off in some way back when the numbness first set in, and the doctors believe that with continued exercise, the nerves will "re-fire" - they've seen it happen. And as of this week, I can say that I'm beginning to get feeling back. Not 100% yet, but it looks as though continued PT and exercise will bring back feeling. I have 100% mobility, so that is not an issue. My physical therapist measured mobility on my last day and compared it with the first day and my goodness! I had nearly zero mobility and a lot of weakness in that foot and today I'm at normal levels. Praise the Lord! Thank you all for praying and please continue to pray that the numb area will completely vanish.<br />
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<tr><td class="tr-caption" style="text-align: center;">Lake camping, and enjoying the energy on this trip that<br />I don't normally experience.</td></tr>
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At my Lyme appointment, I got some great news - I've been tapering off a lot of my "supportive" meds and I'm nearly off of all of them. In fact, in a few weeks, I should be down to a very bare minimum and just on antibiotics, pulsed every 3 weeks. For the first time EVER at an appointment, when asked about my energy levels, I answered that they were very good (on a scale of 1-10, where previously I have always been saying my energy level is a 2, this time I was able to say it was a 7 most days). Of course, it is variable depending on what is going on and I am still a bit protective of my energy stores and do parcel out each week what I know I can handle. But this is such a huge improvement. I still have not had a seizure for 9 months now, and I'm off my seizure meds completely. A physical exam showed that I am just so much stronger now and have improved so greatly since April. This was enough for my doctor to declare that there is hope that I could be completely off of antibiotics in 6 months-year. I am always cautious as Lyme&Co can always be unpredictable, but I am more hopeful than I have ever been because for once in a very long while, I'm steadily rising with consistent gains and not losing ground in my battle to fight the disease. <i><b>Fighting Lyme&Co is not a sprint - it's a marathon, and it's been the longest, hardest marathon I've ever run</b></i>. But I'm here to tell anyone struggling that there is hope - it may have taken me a while (and a lot longer than I wished), but I'm really kicking this disease...FINALLY. God is good - ALL the time - even when I was lamenting in my sickest days, He was good. And now that I am rising, He is still good.<br />
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<tr><td class="tr-caption" style="text-align: center;">After my appointment - good news<br />makes me smile!</td></tr>
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<br />
Another thing to add about my appointment was that I had brought with me some blood work that had been done at my ER visit for my foot - a test that took a few days to come back - the ER doc had said he was going to order a "Lyme test". I really didn't expect much from it and I didn't know which test he ordered. But I got it back and it was one that I really wasn't that familiar with. In fact, when I showed it to my Lyme doctor, I was told that they used that test very early on when the clinic was first operating, but soon found out that this test isn't super reliable (like most Lyme tests) in determining certain things, so they really don't use that test at all. But what they were able to garner from looking at this test (it was quite abnormal), was that in their words, my body is wired that it is very hard for me "to fight Lyme disease". No wonder! 6 years! Of course my body has a hard time fighting Lyme...more so than others.<br />
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-4PBt64b3jyY/V8o0Ylm-BiI/AAAAAAAAY-0/lid4ffTR0v800LpAw7fe7gtLlkOIubEiACLcB/s1600/wash%2Bm.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-4PBt64b3jyY/V8o0Ylm-BiI/AAAAAAAAY-0/lid4ffTR0v800LpAw7fe7gtLlkOIubEiACLcB/s320/wash%2Bm.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sight-seeing - Washington Monument<br />in the background.</td></tr>
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<br />
Now, for the first time in quite a few years, after my appointment I thought to myself, "I think I have energy to do a bit of sight-seeing." No matter there was a heat warning that day, and no matter that I had to park, and walk to the monuments. Praise God that my body was ABLE to handle the walking, the heat, and that I was able to enjoy some time among historical places. And after? Instead of falling to the couch/bed to recoup, I felt completely fine and energized. This is huge, guys.<br />
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I am continuing to do the best thing for my body - continue to nourish it and continue to build up my immune system. And because I am able to exercise more, I do believe that is helping in this whole process.<br />
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-PcmSJZQMrhI/V8o0m-V95DI/AAAAAAAAY-4/gPRqRBluLYs7C1UbF8U1HLuX9DqJPw7RACLcB/s1600/lincokln.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-PcmSJZQMrhI/V8o0m-V95DI/AAAAAAAAY-4/gPRqRBluLYs7C1UbF8U1HLuX9DqJPw7RACLcB/s320/lincokln.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lincoln Memorial - one of my<br />favorites.</td></tr>
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<br />
I'm not 100% yet - there are still day my body says, "rest" - but it's not every day anymore. I'm thankful for the progress I'm making and for the wisdom to know what events to say "yes" to and what things to sit out. I do believe that in the next year I will have no more symptoms. I'm prayerful about this as well.<br />
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I'll keep you all up to date as I continue to heal completely. I can't stress enough how thankful we are for your prayers and your continued prayers.<br />
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<br /><div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-4560653015057357228.post-87614658702667906162016-08-10T21:14:00.001-05:002020-08-03T16:23:15.622-05:00unexplainable<div class="separator" style="clear: both; text-align: center;">
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So....I had the EMG test on both legs and feet last week - but mainly to test the nerves and muscle function of my right foot and figure out what is causing the persistent parenthesis/neuropathy (numbness). After the initial appointment with the neurologist and his repeated questioning of my sanity, I was admittedly nervous going into this appointment. I didn't want to hear anything from him on that subject again and I determined to stand up for myself a bit more this time if he pushed it. <br />
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At first he didn't; I thought he did, but he didn't. He asked sort of out of the blue, "How is your anxiety?" and I think I snapped back a little too harshly, "I DON'T have anxiety! That's NOT something I deal with!" - if you know me, you know I'm pretty even-keeled, but this was just too much and I was so frustrated and nervous (short-term...different than long-term anxiety) - he looked up and said, "Oh, well, I know. The reason I ask is because you updated your medication list and said that you have recently been going off of some of your meds and this one in particular...it can make some people have anxiety issues when they come off of it." I apologized and then told him, no, I've been fine and thought how thankful I was that it's been a very smooth transition coming off of a lot of the medications that have "held my Lyme riddled body together".<br />
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He then asked if I'd ever had an EMG test done to which I replied, "NO" and then briefly described it - electrodes and shocks which are moderately painful and he kept saying I could stop whenever I wanted - but no way! I wasn't there to NOT finish a test, no matter how painful it was - I wanted answers. Then the second half involved multiple insertions of needles into different muscles to "listen" to them and "hear" their functionality. This part was painful too, and again he kept giving me an "out" by saying I could stop whenever I wanted to. I don't know why he did that, but I kept with it because like I said, I was there to get answers and I can handle pain. My right foot and leg for sure felt so much different as far as the intensity of the sensation of the shocks and needle pricks. So I was sure there would be some sort of abnormal result.<br />
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But then he read the results right then and there and said, "Well, you're normal. There is absolutely nothing wrong with your nerves...which is good!" Yes, praise God nothing is wrong with my nerve. He believes there will be no lasting damage because he can't find anything wrong. Machines don't lie....right? Anyway, I expected him to dig deeper since I am still experiencing numbness. But I got a surprise. The next words out of his mouth were, "You know how I feel about Lyme - I don't believe in it - so this ankle thing - it has NOTHING to do with Lyme...NOTHING." Pretty lofty words for someone who admittedly didn't even test for Lyme in all the blood work he ordered. I'm not saying that would have shown him anything, but I think it was pretty wrong of him to make a blanket statement like that. He then showed me to the exit. I stopped in the hall and he turned around to see why I wasn't walking with him anymore.<br />
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I said, "So, if everything is normal, how do you explain the numbness?" He just matter of fact said, "Well, some things are unexplainable. Unfortunately, this is just unexplainable. But at least you know your nerve is fine. So I guess I'll sign off on 4 more week of physical therapy, but then you should stop and I guess we could see how your foot responds then." Then he showed me the door.<br />
<br /><br />So in a way, yes, I'm relieved because, according the the machine, my nerve is apparently functioning just fine! Yay! But, I'm still symptomatic and we have no idea why. I just remember thinking afterward - "Story of my life -- unexplainable symptoms." Could it be related to Lyme? Maybe. I am going to see my Lyme doctor this week and we'll see what they make of all the blood work and test results and an in person physical exam. <br />
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It may just end up remaining filed under - "mysterious" - and it may leave just as mysteriously as it arrived. We'll see.<br />
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Keep us in prayer. Thanks.<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-4560653015057357228.post-11503773818463773342016-08-03T18:40:00.002-05:002016-08-03T18:40:21.363-05:00crazy?Well, it's been a bit over 2 months now and the numbness in my foot has not changed at all. However, I have more mobility and strength in my ankle and foot due to continued physical therapy. I just can't say enough good things about my physical therapist and the team that works with me. (A little more on that later)<br />
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It became very clear early on that I needed to see a neurologist. Almost right after my first week of physical therapy, the physical therapist gravely looked at me and frankly told me that my foot was not behaving in any way that was NOT neurological and she recommended a very good neurologist she knew of that she believed would help. So I made an appointment right away and was seen the following week.<br />
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The appointment was encouraging and discouraging. Unfortunately, (for not the first time in my many years of doctor's office visit experiences), I was questioned more than a few times about my mental state when he saw "Lyme" stamped on my intake form. But to be honest and thorough and for him to get the whole picture and really figure out what was wrong with my foot, I felt he needed to know everything. Unfortunately, it led to the majority of the appointment him using phrases like, "have you seen a psychiatrist?" (more than once) and making me feel small. But, finally, after referring him to my Lyme doctor and trying my best to explain some given Lyme symptoms and how they affect the body, he moved on and did take my foot seriously.<br />
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I mean, there really is no way to fake a numb foot - he really tested that out and - you just can't fake numbness. When needle prick is done and you can't feel it, and other little tests are done, I think they figure out that you aren't there seeking attention for attention's sake. You're there for help!<br />
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<tr><td class="tr-caption" style="text-align: center;">Sweet map on my foot</td></tr>
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They drew a nice little map of the numb area on my foot and came up with a plan of action - an EMG test to be done in August (this week in fact), blood work to test for just about everything, and continued physical therapy. I think I counted 17 vials of blood taken at my draw? Yikes! And then I had to go back the next day for another blood test that took 3 hours and involved 4 more draws. I'll get the full results and explanations when I go in this week for my EMG test (a test that basically maps your nerves and muscles and their functionality).<br />
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<tr><td class="tr-caption" style="text-align: center;">All marked up</td></tr>
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While over the last two-ish months, nothing has changed in terms of the numbness of my foot or the mobility of my last 3 toes on that foot, I will say that the physical therapist is A.M.A.Z.I.N.G. She is not only focusing on my foot - she's noticed that years of being sick has made my whole body weak and has gently worked on getting my body back to a place where it can build up stamina and gain energy from gentle exercise. And through it all, still no seizures. I started on a recumbent bike for 5 minutes. Now I'm on a treadmill for 10-15 minutes, not to mention the myriad of other exercises I do. It's given me confidence to branch out and do light exercises on non-therapy days.<br />
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I'm not totally healed from Lyme&Co. yet, but this is huge stuff, guys! Being able to exercise without completely falling apart is pretty great. I still get worn out and I still have to parcel out energy for the week, but I can tell I'm getting better and my body is getting stronger. It's a good thing.<br />
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So next thing up for prayer is that darned EMG test this week and the results of my blood work. Thanks, everyone!<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4560653015057357228.post-69696467606013012742016-06-15T12:32:00.000-05:002016-06-15T12:32:51.482-05:00unchartered<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Poor foot</td></tr>
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So....after that ER visit for my foot...it did not end up getting better. I mean I can now wiggle my big toe a bit, but the patch of numbness is still there and mobility is still severely limited. My doctor decided it would be best to get me to physical therapy quickly and also get me back up to my previous dose of neurological drugs (that I had worked hard to come off of because I haven't had seizure activity since December!) in the hopes that feeling will return. This will take a week or two because you have to titrate the medicine slowly.<br />
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So I wanted to give an update about how the initial PT evaluation went the other day. The director of the clinic evaluated me and she was really kind and understanding about Lyme disease.<br />
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After a thorough evaluation of both legs and feet (my right one is still numb in a particular area and severely immobilized and very weak), she pointed out along the way and after, that everything was really "fitting" MS symptoms - the way my good foot would do a little double take when she asked me to push back against her restraint, etc. She did <i>so</i> many of these sort of tests on both legs/feet and explained scientifically what was happening.<br />
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She said most times when you get numbness in the area I have it in, it affects the mobility of the foot in a certain way, but my foot was NOT reacting how she would have thought it would and that made her think maybe it was something neurological COMBINED with an issue with my c-spine which all points to MS.<br />
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But at the same time she acknowledged it still could be some odd Lyme thing going on and maybe it would clear up. And her goal as a physical therapist was to strengthen and get my mobility back.<br />
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She seemed to puzzle over it a lot and test my feet and legs and hips and reflexes all different ways and even at one point said, "You know how some people are more immune compromised and they seem to get dumped on? I just wonder if you could have Lyme AND MS?"<br />
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She said because of the way my feet were reacting, it just wasn't following the normal "pinched nerve" symptoms, so she ruled that out and she thinks it may be a neurological issue and if my neurological meds DO help take the numbness away, that would be great because the longer it's numb, the greater chance for permanent nerve damage.<br />
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She's going to have me come in quite often for the next 4 weeks and then re-evaluate and if things haven't gotten better or they have gotten worse, that's when she would want me to see a doctor right away about MS again with all her notes in tow. If things are improving...even a little bit, then we would continue for another 4 weeks and hopefully see the most improvement after that.<br />
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So you can be praying that my foot will improve and the numbness will disappear very soon and that no permanent nerve damage will be done!<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4560653015057357228.post-38086734859137257552016-06-09T13:32:00.000-05:002016-06-09T13:35:43.226-05:00footless....going on about 48 hours now. The oddest thing and we still don't have an explanation for it. Two days ago a portion of my inner foot started tingling then went numb completely and left portions of my foot with very limited mobility and the inability to wiggle my toes or rotate my ankle. Now, if this had happened 9 months ago or before I probably would have immediately thought: "LYME". But because I've been doing so much better - no seizures, very few neurological symptoms, and the fact that I'm on such a low regimen of antibiotics - sort of there to "mop up" what's left of Lyme&CO, I did get a bit worried. I put in a call to the after hours on call Lyme Dr, but didn't get much helpful info because they didn't have my chart in front of them and because after about 2 hours of trying a few "tricks" things seemed to be getting worse, we made the call to go to the ER.<br />
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Most Lyme patients DREAD the ER - doctors roll their eyes, nurses look at your medication list or hear "Lyme" and then treat you with un-kindness. I can't tell you how many times this has happened to me. The anxiety about going to the ER was greater than the anxiety I had about the paralysis of my foot! That should tell you something. But I thought it needed to be checked out because once again (as a few years ago when I had that <a href="http://todayifeelexceptionally.blogspot.com/2011/09/lumpy.html" target="_blank">lymph node lump</a>), you can't just assume that "every symptom" is a Lyme symptom. Since moving to our area we haven't been to the local ER so this was a new experience.<br />
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I prayed and prayed that God would bless us with kind nurses and a kind doctor and He answered yes! The doctor was so understanding and so thorough. He even asked for the number of the on call Lyme Dr so he could speak with whoever that was to better understand what might be going on. He said he didn't have much experience with Lyme but he did want to learn more. He thought my symptoms very odd but didn't dismiss them at all and suspected MS based on a very rigorous examination. So into the MRI tube I went and lots of blood was drawn so he could check for other things - inflammatory markers, etc. And story of my life -- it all came back squeaky clean. <br />
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But instead of treating me like I was faking (and this has happened before in other doctor's offices and ER's we have visited), he sat down on the bed and talked to my husband and I and told us it may still be MS because sometimes the first "episode" and tests don't always prove positive - you have to wait for another episode to happen. He said probably not, but to be on the lookout for that. He said it could be a weird Lyme thing and that my Lyme doctor would follow up with me to see if they could figure out if it had anything to do with that. And then he said what I wish a lot of doctors would say - he said, "Sometimes I wish we doctors had a big book to open for mysterious, unexplained-by-tests incidents because that would make our jobs so much easier!" He was so kind! He did one last check to see if my foot had improved and then was about to discharge me but before he did he said, "You know what, I don't like that you can't flex - it leaves that tendon on the back of your heel just sitting there. Let's get you a boot so your tendon doesn't go into a sort of "atrophy" -- so it can stretch." And then told us how late he'd be there that evening if we had any questions or if it got worse and then wished us the best. I was diagnosed with peripheral neuropathy and a few other terms meaning "weakness" and such. But when we left, even my husband said, "Wow, THAT was a different experience than our last ER visit! He was a great doctor and what nice nurses." (or something to that effect) And it was exactly what I was thinking.<br />
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<tr><td class="tr-caption" style="text-align: center;">This portion is numb</td></tr>
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So that brings us to now -- no change and we are still working with my Lyme Dr to figure out what is going on. What do you do when the gamete of tests have been run and everything is clean? And yet -- a portion of your foot is numb, you can't wiggle your toes (I've been able to increase to wiggle my big toe!! Go big toe!!) and you can maybe flex your foot a cm off the ground? This is what we are trying to figure out. Is there permanent nerve damage? Will it disappear as quickly as it set on? <br />
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<tr><td class="tr-caption" style="text-align: center;">I can flex my left foot but can only barely flex the right</td></tr>
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I am able to walk, but my "lump foot" seems to drag a bit. Am I scared? I definitely was when it first set on, but at this point there's nothing to be but calm because like I tell my kids - "Will God still be God if this never goes away? Yes." So for now I'm calm. It would be nice to have answers and I hope with further testing or whatever we'll figure it out, but hopefully and prayerfully it is just a weird "Lyme" thing that will just disappear soon.<br />
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As for an update from my last Lyme appointment - it went so well. My Dr. could tell that I was doing so much better cognitively than the previous appointment! And it was decided that to see if my energy would improve it would be prudent to continue tapering off some of the unnecessary meds that I just don't need anymore because I am getting better (I haven't had a seizure since December!) and other such ones that I've been on for a long time that just might not be useful anymore and may be causing low energy. That went well and I'm basically at the point where I should be for my next appointment to re-evaluate things and I did see a slight increase in energy but it's tiny. The doctor said that energy is one of the last and hardest things to regain for a Lyme patient. <br />
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But my husband and I are encouraged. We've seen so much progress. I'm tolerating my antibiotic cycles so much better than before (although they are still hard weeks), and while I don't have the energy of a regular woman in her 30's (by far!), I'm in such a better place than I was even 6 months ago. <br />
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So prayer request - that the peripheral neuropathy in my foot will disappear soon!<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560653015057357228.post-33900514354818078352016-04-18T16:54:00.000-05:002016-04-18T16:54:57.669-05:00anticipatory It's been so busy. It feels like one thing after another this last month. And it can be a good barometer of how I'm healing to watch how my body responds to all the busy-ness. Our family just got back from Seattle. The WHOLE family went. WOW. For sure my body isn't up to traveling alone with all the kids, and I'm thankful my husband volunteered to sit with the two most precocious ones on the way there and the way back. And I'm thankful for gracious and understanding friends who let me just sit and be at their houses, not expecting me to jump up and help chop food and set tables. They remember me at my sickest 5 years ago and while I've improved so so much since then, they are the kind of friends you want for life. They are godly and humble and selfless and they put your needs above their own and don't judge you for just needing to sit and watch them prepare food for (oh my goodness) 8 kids in all if you combine them!!<br />
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It was non-stop while we were there and it was so fun! But when we got back, my body crashed. We walked in the door, I lay on the couch, and my body just crashed. And it's been doing that for quite some time. Even though I've been doing so much better and been able to do a lot more, walk a lot further, etc - I still <i>pay</i> for it. Usually it means I have to lay, recharge a bit, and then I'm able to get up and do a little more. But the crash from Seattle was literally a 6 hour straight nap during the day, wake up to eat a little bit even though my tummy was queasy, watch a bit of Netflix, then sleep hard through the night. My body needed a really big re-charge. And the following day I still felt like I was recovering!<br />
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So energy is still a huge issue we are dealing with and in a few short days I will go to DC to see my doctor and discuss these things and get examined and find out what's what.<br />
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A lot of times I try to compare it to the phone battery - imagine waking up, but you only have about a 40% charge - even though you just slept through the night! After a shower and getting dressed, you're already down to 20%. Making breakfast for the kids takes you down to 5% and then you start thinking in your head about how to ration that last 5% until you can re-charge. I have it down to a science on some days when we have to go out. The shower goes out the window, obviously, and that saves me a little bit of battery "juice"; my husband makes the kids breakfast or the eldest will chip in, and that helps; but still you have these unexpected things that come up and boy, oh boy! You just don't know what is going to "drain your battery" or when you'll have a chance to lie down and re-charge. Sometimes a nap is needed for a really good re-charge, sometimes just quiet and lying down is needed. It all depends on the severity of what energy has been expended. And THAT is what needs to continue to be addressed with my doctor and team of doctors. They have already been working on this and one of their solutions has already proven to have been helpful, but we've got some work to still do.<br />
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So that is why I am anticipating this next appointment at the end of the week to find out the next plan of action and see if we can't get some more energy ideas put into place and well as continuing to address killing off the last remaining little buggers of Lyme&Co. Thankfully it looks as though there may not be many left. But just as soon as I start thinking that and the doctors start evaluating that, sometimes Lyme can throw you for a loop...it's such a tricky disease. So we continue to pray that God heals me completely and thoroughly and rids my body of all traces of this horrid disease!<br />
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We are thankful for how much more I am able to do and for all the improvement we've seen over the last years. Even when it's hard to be thankful for the lows, I know God has used them to help encourage others, so I know there is glory for Him in that. And I know my kids watch me closely and are learning valuable lessons that I hope one day will translate to them in one way or another. So - I anticipate the end of the week and what the doctor will say!<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560653015057357228.post-4666063045531078272016-03-16T20:46:00.000-06:002016-03-16T22:45:57.229-06:00curled up<div class="separator" style="clear: both; text-align: center;">
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It's treatment week and it's just about that time in the week that I wilt. My husband walks in for lunch and finds me curled up in a tight ball on the couch, the kids doing (what I can only hope are good and right) things in the playroom, and it's almost just <i>routine</i> now - the tighter I'm curled, the more he knows I'm fighting the pain and the ugly ickiness that comes with killing what's left of the Lyme disease and the few co-infections I have left to get rid of that the tick gave me. He acknowledges me and states (more than asking), "The medicine is catching up." And I sort of groan an unintelligible answer. And then he goes into the kitchen to do what I still long my body could do - a simple thing - make lunch without feeling like I've run a marathon! He gets lunch on the table for all the kids and brings me something to eat and I sit up, dizzy, but manage to eat even though my tummy doesn't feel right and I wish I had some strong ginger beer to help ease the queasiness.<br />
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I'm thankful that the Lord has let me have good mornings. We get a lot done in the mornings - all that needs to be done gets done, but by lunch, I'm done for and then - as far as the kids are concerned, ESPECIALLY on treatment week, it's "room time". They've gotten used to it since they were little - it started with music and toys and books in their little rooms and just branched out to accommodate me needing a rest time on more trying days when I need quiet and days when curling up tighter and tighter and tighter is really the only solution until help arrives (aka "Daddy's-home-from-work").<br />
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<i>"If you really get into any kind of touch with Him you will, in fact, be humble -- delightfully humble, feeling the infinite relief of having for once got rid of all the silly nonsense about your own dignity which has made you restless and unhappy all your life."</i> - C.S Lewis</div>
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We are really thankful that I haven't had a seizure since December. We are praying that it remains that way. I have to be mindful of various things when my body feels "on the verge" as we call it - noise, sensory overload, even standing for too long! So far, though, my doctor (and we) think that the dose of my seizure medication and the continued treatment of Lyme&Co and detoxing has helped with the seizures which used to be such a big problem - many a month, and now, praise God, ZERO since December!</div>
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When you're curled up in that tight, tight ball, all you can think of is the pain, or how awful you feel, or how you just.can't.get.up. But that's the thing - it's another opportunity to turn your suffering into a mindful exercise of putting your mind off of yourself and your suffering and putting your mind on to Christ. I still often don't know how or why God is putting me or us through this trial or this period of continued suffering, but I do know that He will and has been glorified through it; I need to stay steady at the course.</div>
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<i>"The Son of God suffered unto the death, not that men might not suffer, but that their sufferings might be like His."</i> - George MacDonald</div>
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As we come upon Easter and think about how Christ ultimately suffered for us, it's hard not to ponder and worship Him in a different way through the lens of one who has and is suffering. I can find many things that God has blessed me with and I am humbled. I'm still learning to look along the <a href="https://www.calvin.edu/~pribeiro/DCM-Lewis-2009/Lewis/meditation-in-a-toolshed.pdf" target="_blank">beam of sunlight</a> in regards to my affliction. </div>
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And most of all, I keep beating this phrase into a kind of repetition when those moments of needing to curl up tight are all I can do - "this light <i>momentary affliction </i>is preparing for us<i> an eternal weight of glory</i>" - </div>
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<b>"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."</b> - 2 Corinthians 4:16-18</div>
<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560653015057357228.post-17961570982330097972016-02-12T14:32:00.000-06:002016-02-12T14:32:07.784-06:00in true love<span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">These are all words I've written before, but they are all compiled a bit differently. You'll just have to excuse me. My brain isn't functioning well enough to come up with original material today! But I feel it's been too long that I haven't sung the sweet praises of the guy behind what makes this whole "machine" keep working, ticking, keep chugging along. I honestly wouldn't be encouraged enough to continue on without God's graces and he tries to point me towards that in everything he does. So - here we go:</span><br />
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<a href="https://1.bp.blogspot.com/-cUMJs3WXFxM/Vr4-RFuhXDI/AAAAAAAAYp4/KjzN-khS98s/s1600/matt%2Bwedding.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="212" src="https://1.bp.blogspot.com/-cUMJs3WXFxM/Vr4-RFuhXDI/AAAAAAAAYp4/KjzN-khS98s/s320/matt%2Bwedding.jpg" width="320" /></a></div>
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<a href="https://3.bp.blogspot.com/-G_w6cJ_qKOo/Vr4-jhYuZUI/AAAAAAAAYp8/9HSkCJWIIGA/s1600/wedding%2Bvows.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="132" src="https://3.bp.blogspot.com/-G_w6cJ_qKOo/Vr4-jhYuZUI/AAAAAAAAYp8/9HSkCJWIIGA/s200/wedding%2Bvows.jpg" width="200" /></a><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">I've probably written about it before. In June 2006, Matt and I vowed before God and our 150 or so guests to love each other "in sickness and in health". It's funny when you are preparing vows and thinking about them and the seriousness of them, when you read about your promise to love each other whether you're healthy or not, you consider minor illnesses like the flu or cold and you kinda get warm fuzzies thinking about how you'll get to pamper your husband-to-be with some homemade soup and some TLC. You briefly consider the possibility of cancer or some other serious illness later on - WAY later on, but you're young, so those are fleeting thoughts that skip by without dwelling on the sadness of them but you know you are promising to stay even if that were to come about.</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">But we NEVER in our preparation for marriage even harbored an inkling of a thought about what would happen to us. We got pregnant soon after getting married and were so overjoyed. Our first anniversary came and went and then we were holding our little baby in our arms. All seemed fine until I got gallstones 5 weeks after birth. That was the straw that broke the camel's back. A camel's back we didn't know existed until then. It was the beginning of a long spiral downward into what we now know is Neurological Lyme Disease and Co-infections.</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">It was many days of pain, misdiagnosis, miscarriage, another baby, confusion, more misdiagnosis, more miscarriages and ultimately watching my husband watch me wilt before his eyes. I went from a healthy 135 pounds to a sickly 105 pounds. I could see the pain in Matt's face when he looked at me helpless. He WANTED to help me. He didn't want to run away or run out on our marriage. That never crossed his mind. He was so affected with pain FOR me that he would often (and still does) just sigh and say, "I </span><i style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">wish</i><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> there was some way I could take your place."</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">Finally, 4 years into marriage we got an accurate diagnosis. While the diagnosis of Lyme&Co isn't grim in the sense that you are sentenced to a slow painful death, it IS grim in the fact that you are sentenced to a slow, painful recovery. If Matt or I thought this was the easy answer to our years of frustrating misdiagnosed problems, we thought wrong.</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">The diagnosis came just in time. I started having partial seizures (which later became much more severe) - something that left me scared and short of breath, just watching my limbs flail and wishing so badly I could just be unconscious (and years later I would be) for them. Matt would calmly be by my side and talk soothingly in my ear while trying to shield me from the view of our two little ones. I was embarrassed that he had to see me that way. Heck, he'd seen me in way more "compromising" positions that </span><i style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">should have</i><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> been embarrassing but weren't. But I think what embarrassed me about getting so ill was that I had always prided myself on how strong I was, how much endurance I had, how I could (usually) "keep up with the boys". And here I was not able to move on my own. I had to have help in the bathroom! I needed help showering! And, </span><i style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">gasp!</i><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">, I had to be pushed around in a wheelchair! I mean, it all felt </span><i style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">demeaning</i><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">.</span><br />
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<a href="https://2.bp.blogspot.com/-Uqm53wXnEcU/Vr4kXADZTOI/AAAAAAAAYpo/_k3h6IMD_Is/s1600/Disney%2BWorld%2Bwheelchair.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="213" src="https://2.bp.blogspot.com/-Uqm53wXnEcU/Vr4kXADZTOI/AAAAAAAAYpo/_k3h6IMD_Is/s320/Disney%2BWorld%2Bwheelchair.jpg" width="320" /></a></div>
<br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">But I'll tell you what, my husband NEVER made me feel demeaned. He helped me without a second thought, </span><i style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">like it was his job</i><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">. He's offered help when I was about to heave, picked me up off the bathroom floor and carried the full weight of me, and he's stayed by my side as I convulsed while neither one of us felt comfortable but had no idea what to do otherwise. He's shoved medicine in my mouth when I otherwise couldn't do it myself. He's cut up my food because my joints hurt and he offered to feed me when he saw me wilted at the kitchen table before my dinner. The thing is - it </span><i style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">is</i><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> his job. He promised it at our wedding. But he has never treated it as a burden. </span><br />
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<span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">It's times like these that I reflect I am just dumbfounded and in awe at what a wonderful God I have, that He brought Matt and I together. I can truly see His precise hand in the matter, knowing that I'd need this man and his humility and his servanthood in my life.</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">I'll tell you when I first understood the meaning of love in our marriage - - when my husband lovingly and without hesitation took on all the ugly parts of this disease that have made me physically not beautiful, emotionally not very nice (mean to </span><i style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">him</i><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">), and spiritually downtrodden. He must truly love me and THAT gives me butterflies as I realize he is imitating our Savior which is just how he was commanded to love me in God's word at our wedding years ago.</span><br />
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<span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> All the reasons I FELL in love with him in the very beginning, happen to be the same reasons I love him today. Let me give you some examples:</span><br />
<br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">-</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; font-style: italic; font-weight: bold; line-height: 16.8px;">Matt displayed humility and servanthood when we met</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> - Over the course of our marriage this has showed itself very clearly. He never acts better than anyone; he always thinks and talks the best of people; he proactively looks for ways to serve me even when I don't ask; he doesn't complain about the 'burden' I can be since my health has been, let's just face it, AWFUL - for most of our marriage -- he just tells me more than I could ever ask for, how much he loves me and never regrets marrying me; he never hesitates to admit fault and isn't stubborn about changing to become better for Christ. He is oh-so-patient with his feisty wife and doesn't expect me to be something more or less than I am. He encourages me to be like Christ but loves me even though I'm a sinner. He's brilliant too; he'd get mad if I told you his score on the SAT, but he won't talk about it or rub it in *wink*....really...try asking him - he gets super uncomfortable and you'll never get him to tell you :)</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">-</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; font-style: italic; font-weight: bold; line-height: 16.8px;">Matt displayed persistence and diligence when we met</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> - He works so hard, yet effortlessly and he's faithful to his job and hardly complains about it even though the hours can sometimes be late and his previous job was, I believe one of the hardest jobs of all time. He views life through the lens of God's sovereignty; he realizes God has planned our life to be the way it is, so instead of complaining about the seemingly bad things, he just plugs through them, trusting God because He is trustworthy. He learns things quickly and if he NEEDS to learn something, he pays attention so he can get the hang of it fast. He's never scared away from a project just because he doesn't know how to do it. He sets about working with his hands to figure it out. He's very determined (something his daughter has taken after him about!).</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">-</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; font-style: italic; font-weight: bold; line-height: 16.8px;">Matt displayed teachability when we met</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> - He is always open to suggestions (and I give them way too frequently) and always willing to change; but he's not a push-over...he'll defend his honor when needed and he'll put me in my place gently whenever I need it (thankfully!). He does care deeply about sin and wants to be holy. He is so trustworthy and honorable and my heart swells with pride when I think about him *flutter flutter flutter* :)</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">-</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; font-style: italic; font-weight: bold; line-height: 16.8px;">Matt displayed leadership when we met</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> - He's a good, strong, dependable leader. He doesn't flaunt his 'power' in our marriage. He leads with care and always tries to understand me and come alongside me. He communicates with me and tries to make our marriage a joint commitment, not a one-sided dictatorship. He makes it EASY for me to follow him and trust him because he cares so much about what I think. He doesn't have to, but he has totally earned my respect instead of demanding it. He's a great daddy too and I know our kids are growing up respecting him as a father and learning from his humble example. I think it will be easy for them to want to know God more because of their Daddy's faith.</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">-</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; font-style: italic; font-weight: bold; line-height: 16.8px;">Matt displayed a desire to know Christ more</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> - I love how Matt gets excited about the Bible. He loves the Old Testament stories and often has insight to share with me about how applicable it can be to our lives. He thinks about Christ's words in the New Testament and wants to follow Him. He understands how to interpret the Word of God correctly and in context and how we should apply it to our lives to grow closer to Christ in our walk with him as a couple and as individuals.</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">-</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; font-style: italic; font-weight: bold; line-height: 16.8px;">Matt displayed humor and laughter when we first met</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> - I cannot tell you just how fun it is to laugh with Matt. We get the giggles ALL the time. We will laugh until we cry. We find the same things funny (which if you think about it is a real blessing....wouldn't it be awful if he thought some movie that I thought was terrible, was super hilarious?). We enjoy the same silliness that only each other understands and we can make each other laugh at the most rotten times in our lives. He knows how to get me out of a grump-frump by persistently, but not annoyingly, being silly to make me smile. This is a feat no one else can do! He knows how to balance the fine line of teasing me without offending me (too badly at least) :) He encourages me not to think too far ahead and get sad about the future (when sad things are ahead) when we have so many happy blessings right here in front of us.</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">-</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; font-style: italic; font-weight: bold; line-height: 16.8px;">Matt displayed spontaneity when we met</span><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"> - He never complains when I come up with some last minute change of plans. He's fun to adventure with and even though the adventures don't always go as planned, it's fun to be along for the ride with HIM. We've gotten lost together so many times and sometimes even though I don't show it in the moment, I secretly enjoy the hilarity of our misadventures.</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">What a blessing to have a husband who doesn't change with the wind and what a blessing to know JUST what I was getting - no surprises after we said "I do." The only thing I didn't expect when I got married was how much fun it would be to be married to Matt.</span><br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"><br /></span><br />
<span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">I think time flies when you're not having fun too. Icky antibiotics and a routine that just kills ya. It's not fun for me, but I see love all over and through it. He care for me so much and I am so blessed that he is my husband. </span><br />
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<span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">When I was on IV last year, he left for work at 7am, but we got up at 6am so that he could administer 2 doses of IV meds. </span><i style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">THAT</i><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">, folks, is love for a guy who is not a morning person. And he didn't complain about it at all. No grumbling or whining or hemming or hawing; I've got a keeper and boy do I thank the Lord for him so very often that he's stuck with me through SICKNESS and health. He's kept his vows for nearly 10 years of mostly sickness. We pray this will be the year that health prevails. But if not and the Lord chooses another path, we'll trust Him with that and do what He bids.</span><br />
<br style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;">I know that neither Matt nor I are the exact same people we were when we got married ten years ago, but I know that the changes that have happened are GOOD and have brought us closer to the Lord and have deepened our faith and brought us closer to each other. Marriage isn't perfect and isn't always easy but when you follow the Lord and keep Him central in your marriage and try (ever so hard sometimes when your natural inclination just wants the opposite) to put the other first, it can be joyful.</span><br />
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Life is NOT how we dreamed it should be at this stage in our life. Married to each other - each other's best friend, 3 kids. I think we envisioned our lives being more adventurous. I mean, this truly has been some kind of adventure but we thought we'd be adventuring in <i>other</i> ways - across the world together, hiking, traveling, being more involved in our church, being more involved in tuning the hearts of our kids. I know for a fact that when we vowed our vows on our wedding day, that neither one of us expected THIS.</div>
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<i>Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed</i>. I Peter 4:12-13</div>
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But really we should have been ready for it, not surprised. If we were truly letting God lead our lives we wouldn't have been so taken aback. Even with the <i>good</i> things He's given us. I've always been so <i>surprised <span class="Apple-style-span" style="font-style: normal;">by them. How </span>wonderful </i>the good things that God gives us are. We have SO many blessings and each time I was surprised at how good they were, when really? I should have known it would be so wonderful based on WHO He is. Maybe if I had spent more time studying WHO God really is I wouldn't have to remind myself that the good things are more wonderful than we can imagine and the bad things are not out of His control.</div>
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<i>“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain”</i> - C.S Lewis The Problem of Pain</div>
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<br />We don't doubt God's sovereignty over this trial in our lives. Even as bad as it has been and as worse as it's got. We're no longer at the point of feeling shocked at each new physical scary symptom. We're leaning on our Guide knowing that He may keep giving us scary things to deal with and giving us things we don't <i>want </i>to experience. But we know it's not out of His control. He is leading us all the way.<br /></div>
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<i>The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. </i>Deuteronomy 31:8</div>
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So here are the last few things I have to say about my partner in life that God ordained to spend with me through thick and thin - the things I love about him - the not so serious things - the silly, fun things that wrap this up and make it a bit more lighthearted: </div>
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<span style="line-height: 16.8px;">1) I love how he's taken on the role of "chef" in our family since I've gotten ill and haven't had energy to make dinners. He's taken it to the extreme and done VERY well with it. He does own the Julia Child cookbooks and has </span><i style="line-height: 16.8px;">read</i><span style="line-height: 16.8px;"> them and now understands the </span><i style="line-height: 16.8px;">whys </i><span style="line-height: 16.8px;">of how cooking her way works well</span><i style="line-height: 16.8px;">. </i><span style="line-height: 16.8px;">He'll explain to me why I am saying, "These fingerling potatoes are SOOOOOO good!". He LOVES to cook and come up with delicious food for us each night. He's a good chef and someday I know he'll go to culinary school. </span></div>
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<br style="line-height: 16.8px;" /><span style="line-height: 16.8px;">2) </span><span style="line-height: 16.8px;"> I love how he loves our kids. He wants every little story about them that he misses during the day while he's at work. He laughs with me at their silliness and will often report to ME when they do something hilarious that I've missed. </span></div>
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<span style="line-height: 16.8px;">3) I love how he's the best singer of 'Mr. Roboto' that I've ever heard.</span></div>
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<br style="line-height: 16.8px;" /><span style="color: #333333; font-family: Verdana, Geneva, sans-serif;"><span style="font-size: 12px; line-height: 16.8px;">4) I love that he can spend hours on a piano bench taking turns playing the piano, guitar, and ukulele.</span></span><br style="line-height: 16.8px;" /><span style="color: #333333; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 16.8px;"><br /></span></div>
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<span style="line-height: 16.8px;">5) I love how he likes our cat (even though he might deny it to your face...but he likes her and that makes me happy).</span></div>
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<span style="line-height: 16.8px;">6) I love how he makes fun of the music on my playlists, yet he listens to them and sings along.</span></div>
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<br style="line-height: 16.8px;" /><span style="line-height: 16.8px;">7) I love how he never ceases to keep me entertained just by being himself.</span></div>
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<br style="line-height: 16.8px;" /><span style="line-height: 16.8px;">8)</span><span style="line-height: 16.8px;"> I love that he studies God's Word faithfully.</span></div>
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<br style="line-height: 16.8px;" /><span style="color: #cc0000;">Happy Valentine's Day, to the one who I know won't abandon me even though I'm quite a mess!</span></div>
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<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-4560653015057357228.post-44907955470649287062016-01-04T16:11:00.002-06:002016-01-04T16:11:40.836-06:00aliveI'm here guys. I know it's been 8 months. I did get my line out. I did take a shower (only to find out our hot water heater was really old and only held hot water for 5 minutes -- so my husband gifted me a new one and I took a very long HOT shower). I did take a jacuzzi. I did swim in a pool.<br />
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It's been 8 months. The line came out. It's been hard...still. Maybe I expected it to be easier like *poof* - your line is out - you are a jump higher on the mountain climb of Lyme&Co? But it is still a bumpy mountain bike trail that hits rocks and divets and goes deeply down and up up up and then down again.<br />
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It's been <i>hard</i>. It's not just Lyme I have to contend with so that makes it all the more hard. Life and Lyme - how <i>do</i> people get better I wonder sometimes? But my doctor is committed. Won't give up. In it for the long haul. Despite being beaten up by the IDSA - they trudge on because of patients like me and you because they see us getting better even if it is little by little. They are trained to see the sunshine as the coal dust settles and they see it and it's what keeps my doctor and staff going and for that I can be grateful!<br />
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Anyway. I haven't been up much for writing. But I'm here and much has been going on in my Lyme world. And maybe someday I will write about it. And maybe today writing something means I'm a little more open to sharing more and more. Hope you all are soldiering on no matter what ails you! ((hugs))<br />
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<a href="http://4.bp.blogspot.com/-CkpSNnyWj70/Vors-BbI9zI/AAAAAAAAYpQ/Tb_AqVQM_xY/s1600/heather%2Brocks.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="http://4.bp.blogspot.com/-CkpSNnyWj70/Vors-BbI9zI/AAAAAAAAYpQ/Tb_AqVQM_xY/s400/heather%2Brocks.jpg" width="400" /></a></div>
<br /><div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560653015057357228.post-50697963418940237932015-04-20T17:02:00.003-05:002015-04-20T17:02:51.780-05:00like it's coming out<a href="http://1.bp.blogspot.com/--Cb_0f-Q0ek/VTV3Zh2hqlI/AAAAAAAAYU8/5UURgwQbE4E/s1600/last%2Bport.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/--Cb_0f-Q0ek/VTV3Zh2hqlI/AAAAAAAAYU8/5UURgwQbE4E/s1600/last%2Bport.jpg" height="320" width="180" /></a>This is the week that Lord willing my PowerLine will be coming out. Just a couple more Lactated Ringer's solution drips through the line and then it'll be bye-bye. It's been about a year since it's been in and it did help me a lot. Of course I'm still working hard to get well, but going through IV was a big push in the right direction.<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560653015057357228.post-62629905755581086282015-03-26T14:05:00.000-06:002015-03-26T14:05:00.180-06:00limed<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-7gxy8YahhS8/VRRS5OG_80I/AAAAAAAAYMg/8VEOZ-MhtvU/s1600/lyme%2Bcollage.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-7gxy8YahhS8/VRRS5OG_80I/AAAAAAAAYMg/8VEOZ-MhtvU/s1600/lyme%2Bcollage.jpg" height="320" width="320" /></a></div>
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Lyme disease is often misdiagnosed as Chronic Fatigue Syndrome, Fibromyalgia, MS, Parkinson's, ALS, and more. I was misdiagnosed for several years. Both of my girls were treated and now are symptom free. It's so important to rule out Lyme with a specialist if you've received any of the above diagnoses. These pictures were part of the <a href="http://lymediseasechallenge.org/" target="_blank">Lyme Disease Challenge</a> and you may have seen ones like them going around lately. </div>
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My last appointment in DC went well. I'm making slow and steady progress with fewer seizures and we're trying to get down to the bottom of my energy issues. For this next two rounds of treatment we are trying new things to figure out if there are underlying causes and I've had lab work drawn once again to see if anything can be figured out besides "THIS IS LYME" and this disease is terrible. But really, in the end, one day, I will be my normal self again and that is the hope. And energy should be returned to its full strength to be considered normal in my book.</div>
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I'm still without joint pain which is wonderful! I'm so so thankful that the Lord has seen fit to keep that away. I may have kicked it for good. I think the best news from the appointment was that at the end of April I will get to have my line removed! Yipee :) Showers and jacuzzis and beaches and swimming are in my summer future! Just.in.time. </div>
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While things are looking up, life is still quite hard as it is difficult to function on very low energy reserves. So pray that the Lord would strengthen me and that the doctors would find answers as to how to remedy that. And as you can imagine, life doesn't stop when you have three children, especially small ones!</div>
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<i>Lord, I'm drowning</i></div>
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<i>In a sea of perplexity.</i></div>
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<i>Waves of confusion</i></div>
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<i>Crash over me.</i></div>
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<i>I'm too weak</i></div>
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<i>To shout for help.</i></div>
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<i>Either quiet the waves</i></div>
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<i>Or lift me above them--</i></div>
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<i>It's too late</i></div>
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<i>To learn to swim.</i></div>
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-<span style="font-size: x-small;">Ruth Harms Calkin</span></div>
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But I continue to try to stay prepared daily for each "crisis" through prayer and through His Word, for only those things will get you through to the end. And I know He still is doing what He has planned for me even though it's hurting like heck.</div>
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<i>"He knows the way I take; when He has tried me, I shall come forth as gold. My foot has held fast to His path; I have kept His way and not turned aside. I have not departed from the command of His lips; i have treasured the words of His mouth more than my necessary food. But he is unique and who can turn Him? And what His soul desires, that He does. He performs what is appointed for me." - Job 23:10-14</i></div>
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<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560653015057357228.post-22872090247503252992015-02-11T14:08:00.000-06:002015-02-11T14:08:57.379-06:00stalledIt's been a while. But the good news is, I'm no longer on IV antibiotics! I've graduated to orals. I've still got my trusty line in, though and I'm using it for Lactated Ringer's solution to help flush out and detoxify.<br />
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I already have a month of oral antibiotics under my belt and I'm underway with my second month. And like a stalled car just trying to start I feel like I'm screaming at my immune system to please kick in and start! Please! Please! Remember your job - start up again - do what you're supposed to be doing!<br />
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I'm quite worn out all the time and can function minimally, but I have just come out of the battle as my husband reminds me. It's early to start expecting me to bounce up and be perky with vigor. But I've got to say I'm frustrated. I'm so frustrated and downtrodden. This is such a sucking vortex of a disease that brings you down down down into a pit of despair if you don't watch out for it and I've got sucked into it because I wasn't careful to guard my heart.<br />
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It's been 4 years since I was diagnosed, but it was 8 years since I was debilitated by the disease and longer since I've had symptoms. Eight years is a long time to be really sick and nearly non-functioning most of the time with various stages of people and friends who do and don't understand what you're going through with opinions flaring and such. Downtrodden.<br />
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<a href="http://3.bp.blogspot.com/-uydW9w82aXA/VNu2EVnuvMI/AAAAAAAAYJo/qhmUIn_XRyM/s1600/sicky.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-uydW9w82aXA/VNu2EVnuvMI/AAAAAAAAYJo/qhmUIn_XRyM/s1600/sicky.jpg" height="320" width="180" /></a>But there's lots to be thankful for! There have been many who have been so supportive! My family for one! Most of our close friends in the previous states we've lived in - they did so much in acting as family since our family couldn't be there. They truly were the body of Christ and we are so thankful for that.<br />
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I'm thankful my second daughter is (with a tentative voice) Lyme-free. That has been a very long road filled with triumphs and setbacks and heartache and someday I may tell her whole story because I know it may encourage others with parents who have children with Lyme. We have no kids with Lyme disease now. Praise the Lord.<br />
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It's just me now. I need to heal. Why can't I heal faster? More like, why can't I be patient? Isn't 8 years patient enough? I hate this disease. Coming in to see a doctor after being so so sick for 4 years for sure means it's going to take a bit longer to heal than your average person. I know that. My husband and I just wish we could finally be done with this disease once and for all. We see the success stories and know it will happen. But Lord, when will it happen for ME?<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-4560653015057357228.post-26451465162904821512014-11-25T19:26:00.002-06:002014-11-25T19:26:53.327-06:00stunnedLike a one-two punch hit me in the gut. But maybe I'm being too dramatic and I should just get over it. In fact, I almost expected it. Today was my phone appointment with my doctor. Last month's first week of treatment was pretty rough on me. Lots of almost-seizures that were saved with medication and a few seizures that slipped on through. The second week was much better and I am improving in energy, but my "off" weeks are still lagging a bit and what was explained to me today is that in order to "graduate" to oral antibiotics, they really want to see two consecutive months of "good" off weeks.<br />
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I'm not there yet. Not there, almost there, but - NOT there. In fact, I'm <i>so-close-but-not-quite-there</i> that I have to do ANOTHER month of IV. Dr. J misinformed us last appointment that I was done. OH how sad I am. THAT is why I feel a bit sucker-punched.<br />
<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="http://2.bp.blogspot.com/-T0EGN4BvBEc/VHUr4voobnI/AAAAAAAAX58/lit_e2c60w0/s1600/violet%2Bline.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-T0EGN4BvBEc/VHUr4voobnI/AAAAAAAAX58/lit_e2c60w0/s1600/violet%2Bline.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More time to infuse are in my future.</td></tr>
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BUT, in another way, I am SO thankful that we are treating this ALL the way. I don't want to prematurely end fighting this disease the way it should be fought. I want to get every last ounce of fight out of this PowerLine that I can if it will help. I trust my doctor; she is so attentive to detail and spent such a long time on the phone with me today going over really minute details to help paint a bigger picture that would form her opinion and base her treatment plan for me. It all makes sense. It might feel sucky, but it makes sense. And she said she is so so hopeful that this IS the last month of IV and that when I see her in January we can move on to oral antibiotics. That is our prayer. But I've got to say, getting the news just made the tone in my voice for the rest of our appointment change and get more down and out.<br />
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Did I grieve? Yes? (I might still be grieving a bit)<br />
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But will the Lord sustain us through this and however much longer we have to go through IV antibiotics? Yes. The first thing I did after I got off the phone was fall over on the bed and pray. <i> "Lord, please provide for us. Please sustain me." </i>And then I cried. It's tough to go through these rounds of IV as you've heard me describe. I'm not looking forward to Monday. But I'm thankful for the rest of this week that I have off. And I'll try to keep looking for the things I can be grateful for throughout the rest of the week.<br />
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<i>"but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."</i></div>
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<i>Isaiah 40:31</i></div>
<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-4560653015057357228.post-16303990483014696422014-11-14T15:04:00.000-06:002014-11-14T15:47:47.715-06:00Like the end<div style="text-align: left;">
I had my final antibiotic infusion last night. It has come to an end. The last two weeks of antibiotics have been so rough. SO rough. The first was wrought with many seizures and listless moments and two days of lying helpless in bed needing to be brought every meal and every cup of water. I slept most of those two days or watched Netflix if my head didn't hurt at the moment. I'm thankful for my loving husband for caring for the kids and keeping them away so as not to incite a seizure. He knew just how to care for me on those most trying days.</div>
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The second week was better in some ways because there weren't seizures, but there were other evils coursing through my body. The IV drugs had changed and so the side effects had changed and the herxing had changed. I was running a marathon to get to the finish line. My husband kept saying, "Just 8 more infusions....", "Just 6 more....", etc. It felt like I was swimming the English Channel. My body was so worn out. The infusions were taking their toll and hopefully killing lots of bugs and doing their worst since this is the last time we can hit them with the really strong stuff!</div>
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Finally the last day arrived. Thursday. Two infusions to go - morning and evening. Our schedule was to wake up at 6:30am since my husband helps me get it started and he has to get to work. By 8:30am the infusions are done. And I'm done-in. But I've got kids to feed. Thankfully my sister comes that day to help and arrived not to long after I had gotten a simple breakfast prepared so I could just plop on the couch.</div>
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I was desperately out of a medicine that I needed that evening so I had to run to the pharmacy but I had no motivation or energy to do it. My sister offered to go for me, but I had to sort out certain other medications I had to get so I really had to go. I put it off as long as I could and then finally just went, but upon getting there realized that the Target pharmacy might be closing for lunch and I didn't want to have to kill time for 30 minutes. I had 3 minutes before what I thought would be closing time. So I spent energy I didn't have doing the best sprint a person who has no energy could do and high-tailed it up to the pharmacy line. I made it in time! But paid the price in my poor body's energy reserve. </div>
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Got my meds, spent, utterly exhausted - and it hit me - I had ONE more infusion to go. ONE more antibiotic infusion to go. I teared up and decided I deserved a celebration drink - Starbucks was on the way out of the store so I stopped for my favorite drink - a decaf Americano. I could hardly get my order out through the lump in my throat.</div>
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<a href="http://4.bp.blogspot.com/-g0oQu-bs0Rc/VGZrs7z17yI/AAAAAAAAX2Q/99et7PdPezc/s1600/sbux.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-g0oQu-bs0Rc/VGZrs7z17yI/AAAAAAAAX2Q/99et7PdPezc/s1600/sbux.jpg" height="320" width="180" /></a></div>
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All the way to the car I could feel the hot tears in my eyes. Six months of grueling misery and hard work to get to the point where here I COULD make a pharmacy trip on my own and walk without having to sit forever. I definitely have made progress. I still have not had joint pain. This is the third month without it. Praise God! And my energy levels are up. While not to the point where I am "normal", they are so much better than when I began this IV journey. I'm ready for the "rebuilding" phase with oral antibiotics. I'm ready to get stronger and get back to my normal healthy self!</div>
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I sat in the car for a minute and sipped my drink and cried a bit. I dreaded my last infusion because they are no fun. But I knew that it was just ONE more and then I was done. ONE more. I could make it with the Lord's help. <i>"I can do all things through him who strengthens me."</i> Phil. 4:13 I think I cried not only because of what lie ahead but because of all that lay before. My sweet sister-in-law who is suffering from the same insidious disease and who herself is on IV treatment right now sent me a sweet reminder of God's sovereignty. It goes like this:</div>
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<i>"Reader, if God has given you His only begotten Son, beware of doubting His kindness and love, in any painful providence of your daily life! Never allow yourself to think hard thoughts of God. Never suppose that He can give you anything which is not really for your good. Remember the words of Paul: 'He who spared not His own Son-but delivered Him up for us all, how shall He not with Him also freely give us all things;' (Romans 8:32)</i></div>
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<i>See in every sorrow and trouble of your earthly pilgrimage-the hand of Him who gave Christ to die for your sins! That hand can never smite you-except in love! He who gave His only begotten Son for you, will never withhold anything from you which is really for your good. Lean back on this thought and be content. Say to yourself in the darkest hour of trial, 'This also is ordered by Him who gave Christ to die for my sins. It cannot be wrong. It is done in love. It must be well.'" - J.C. Ryle</i></div>
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That sums it up pretty well. Even though this is hard and will still be hard ahead, God has ordered it and it cannot be wrong. It's done in love and I can learn from it. If I resist, it's futile to my benefit in learning.</div>
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So while it's not the end of Lyme, it is a cause of celebration and praise to the Lord that it's the end of "violet" the PowerLine (for antibiotics - I'm keeping it for a few more months for fluids). </div>
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<a href="http://2.bp.blogspot.com/-1BcWZJUjfpA/VGZr8TpZBEI/AAAAAAAAX2Y/PTWpfEG3dxg/s1600/meds.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-1BcWZJUjfpA/VGZr8TpZBEI/AAAAAAAAX2Y/PTWpfEG3dxg/s1600/meds.jpg" height="200" width="112" /></a>I went home, got ready mentally, and the time came. The kids went to bed, and I hooked up to my LAST antibiotic IV.<br />
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<a href="http://2.bp.blogspot.com/-JQQVog3Q4t8/VGZ37P0zJxI/AAAAAAAAX2w/vsOIqTGtqIw/s1600/Infusion.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-JQQVog3Q4t8/VGZ37P0zJxI/AAAAAAAAX2w/vsOIqTGtqIw/s1600/Infusion.jpg" height="320" width="180" /></a></div>
<a href="http://2.bp.blogspot.com/-Mr2CWMGmpC0/VGZsGwk4XoI/AAAAAAAAX2g/Tc6psb49Ykw/s1600/violet%2Bkitten.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-Mr2CWMGmpC0/VGZsGwk4XoI/AAAAAAAAX2g/Tc6psb49Ykw/s1600/violet%2Bkitten.jpg" height="200" width="112" /></a> It was yucky, awful, terrible. When the two hours are up I can barely move. I passed the time by watching one of my favorite shows - The Incredible Dr. Pol and by cuddling with our new kitten who</div>
adores me to death (I needed a therapy animal and somehow she knew it). When it was finished my husband asked, "Is there anything I can get you?". I could barely nod my head no. I just wanted to get into bed and sleep it all off. I lay there forever and let my eyes close. My husband got me some water to take my night time meds and helped me to bed.<br />
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This chapter is closed. Thank you, Lord for sustaining me. </div>
<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560653015057357228.post-48503126129199614202014-10-30T19:56:00.002-06:002014-10-30T19:56:55.669-06:00blue sky-ey<div class="separator" style="clear: both; text-align: center;">
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We just got back from our monthly trip to see my doctor and we had been praying for good news. There was a slight scheduling conflict that we weren't informed of until about 2 minutes before we met with the doctor, though! Instead of meeting with my usual practitioner, we met with Dr. J. This is not a BAD thing at all. I am a creature of habit somewhat, especially when it comes to doctors and I love that my practitioner knows my chart and knows me, but I know she works so very closely with Dr. J, and he often stops in to say hi and see how I am doing. So the change wasn't bad like I said. Just surprising. They said my practitioner wasn't in on Tuesdays. Well, why, then did they schedule me on a Tuesday a month ago if they knew she wouldn't be in??? Oh, front desk! Oh well, it's really doesn't matter, because my appointment went well and in a lot of ways it was great that we got to meet with Dr. J, because we got to discuss some things with him that we keep forgetting to bring up otherwise. He's a very patient man and explains things very well both to me and to Matt.<br />
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My last month went well; really well, in fact. It was the second month without joint pain which is fantastic and this month I had a noted increase in energy. Not enough to the point where I could care for the kiddos on my own each day for a whole day, but enough where I wasn't in bed or couch bound and was able to perform more tasks than I was able to even just one month ago. Both Matt and I have seen a big leap in this. Dr. J calls them "blue sky days" and asked about how many of them I had this month. I really couldn't estimate how many as they seemed to be in spurts or moments each day instead of whole days at a time, but they were there! Blue sky moments! He was greatly encouraged as were we and he was enough encouraged to say that one more month of IV drugs will be it for me and then it will be on to the oral antibiotic phase. Yipee!<br />
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My next IV month will look exactly the same as last month so that means my tummy will be much settled (so thankful), and I'll probably just be worn out a lot and maybe have some headaches (but Dr. J had an idea of how to combat that and thought it may be a toxic thing going on on the brain causing them, so we'll take care of that). I'll have a phone consult in a month and after discussing it with the doctor, I will not have my line taken out until February. Even though I won't be using it for IV antibiotics, I will be using it for Lactated Ringer's solution which are super beneficial for flushing out toxins. I think it's basically just sodium chloride, sodium lactate, potassium chloride and calcium chloride in a fluid bag that hooks into my line - in short - electrolytes - the stuff they hook you up to when you get checked into the hospital.<br />
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So my excitement of taking a shower and a jacuzzi and whatnot...well, it'll have to wait. I understand the benefits and I can be patient for my health.<br />
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We are so excited that this is the last IV antibiotic month and are so thankful for answered prayers about that. Thank you for praying for us and please continue to do so! I'm not well yet and need your continued support through prayer. We are encouraged, though, so be encouraged, too! We wanted to share the good news!<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560653015057357228.post-2908170283616150742014-10-17T12:54:00.000-05:002014-10-17T12:54:02.308-05:00slightly hopefulAt my last appointment 2 weeks ago, we were encouraged to hear that progress HAS been made and that my PowerLine <i>might</i> be able to come out in a month or two depending on how the next one or two treatment rounds go. I have just finished round one and go back to the doctor in a week and a half. I'm wondering if I'll hear the magic words, "You're ready to move on to oral antibiotics!" or if they'll want me to do one more round of IV or even more. <br />
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You have no idea how much I want to take a shower. And wash my own hair instead of having other people do it for me. It will feel so good. And jacuzzis! Oh jacuzzis! My parents have one. I'm scheduling it right now. As soon as this PowerLine is out, I'm going over there and just sitting there for hours. :)<br />
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It feels at least like the IV thing is winding down and that is good news.<br />
<br />
I think the main tipping point and best news of all is that for the first time in a very very long time, I had no joint pain in any joints during treatment. That was huge! And this last round of treatment I didn't either so that is very encouraging.<br />
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Both Dr. J and his P.A that I see agreed to give my gut a break and take me off of the vomit-inducing drugs and that helped so much this month. It was such a reprieve. We had thought we had taken care of all of it last month but there was one pesky drug left that left me still lurching, so they switched me to a supplement that was so much gentler on my tummy. I was so happy.<br />
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We are praying that God is using this medicine to heal me and that I will soon be ready to be a full-time wife to my husband and mommy to my kids!<br />
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Thanks for your continued prayers!<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560653015057357228.post-54085802271505187652014-08-29T14:55:00.000-05:002014-08-29T14:55:04.541-05:00wiped to the bone<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-QgtFP02FJcs/VADXML8cn9I/AAAAAAAAXyI/Svmv5WUCQos/s1600/sick%2Bblog%2B2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-QgtFP02FJcs/VADXML8cn9I/AAAAAAAAXyI/Svmv5WUCQos/s1600/sick%2Bblog%2B2.jpg" height="320" width="180" /></a></div>
"Chemotherapy" they said. "You're not experiencing a breakthrough because IV antibiotics for Lyme is exactly like chemotherapy. It tears you down and wipes you out. You won't feel better until AFTER when we build you back up."<br />
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OHHHHHH! My regular doctor had a family emergency and couldn't see me so I had to see another practitioner in the office who consults with Dr. J. At first I was so disappointed and I thought, "My doctor knows my case history so well!", but then I was pleasantly surprised because really, the whole office is so wonderful and they all work with Dr. J and he was there that day and the practitioner I saw consulted closely with him especially because I'm an IV patient and she was well-versed in IV stuff.<br />
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I guess no one remembered to tell me that I might not get a "breakthrough" on IV treatment. I have been waiting for one, thinking maybe around the corner of THIS or THAT month I'll be able to get up and take care of my kids instead of relying on the every day help of family members who drive to our house and get my kids up and feed them breakfast, lunch and snack until my husband gets home for dinner. So it was actually a blessing in disguise that my doctor wasn't able to be there because to hear the words, "just like chemotherapy" helped me understand. It's <i>okay</i> to feel this way. My body is <i>supposed</i> to be feeling this way.<br />
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Is it fun? No way. Does it suck? Yes sir and ma'am! I can't begin to describe the suffering I am going through and the ripples it creates throughout our family and our extended family. But we are thankful for the help and we just have to find ways to be thankful for the suffering because there is no other way to be during this time or else we'll fall into a pit of despair. It's so easy to despair when you feel this and when it seems like there is no end in sight.<br />
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There was talk at my appointment that I MIGHT be able to get my line out in 1 or 2 months. I remain hopeful but skeptical. It's hard to think it will happen when I feel so awful. But we'll see what my doctor says at my next appointment in 5 weeks.<br />
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Now I know my body is supposed to feel awful because of IV meds, but it isn't supposed to feel quite THIS awful according to blood work. I was tested for ammonia levels and mine were quite high. That can contribute to seizures and overall general bad yuckiness. So I will be going on a supplement that should lower the ammonia levels and hopefully help with seizures and stuff. They will be monitoring my blood levels for ammonia and we'll see how the supplement works. They've had lots of luck with it in other patients so we think it will work.<br />
<br />
<a href="http://3.bp.blogspot.com/-1bBqGw55xUE/VADZTdQ91LI/AAAAAAAAXyU/-PsvZImac5s/s1600/sick%2Bblog%2B1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-1bBqGw55xUE/VADZTdQ91LI/AAAAAAAAXyU/-PsvZImac5s/s1600/sick%2Bblog%2B1.jpg" height="200" width="112" /></a>Because of how bad I'm doing, I am to take a two week break from antibiotics and just focus on detoxing and resting. Then I'll resume treatment full force. They've changed my regimen slightly to help me not throw-up so much and help my tummy not be so unsettled. Oh, I'm so thankful. I came into the appointment and said point blank, "I came in prepared to <i>beg</i> Dr. ____ to take me off of <i>this</i> med and <i>this</i> med and <i>this</i> med because I'm throwing up and so nauseous all the time." The other practitioner said, "Fair enough, fair enough. I'll ask Dr. J. That seems fair." I was surprised. They DID take me off of most of the meds that seem to make me nauseated but kept me on one of the worst ones. But I'll take a reprieve from even ONE. Anything to make the days less sicky. Feeling run down and hurt and awful is one thing, but then to add vomiting and nausea to it just adds a whole other suffering dimension to it that is hard to explain unless you've been there.<br />
<br />
So the appointment as a whole went well I'd say. I'm resting as of now and biding my time until treatment starts up again. I wish I could say I felt well off treatment but that is just how IV works as they told me. I'm not going to feel well yet. And it's good to know that.<br />
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Thanks for your continued prayers for our family as we navigate this rough time!<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4560653015057357228.post-30516187044220963052014-07-07T22:38:00.001-05:002014-07-07T22:56:55.748-05:00in a state of calm<div class="separator" style="clear: both; text-align: left;">
So I finished IV treatments for this round last week. Whew! Doozy. It was A.W.F.U.L. I'm dreading the next round. But for now I'm in the eye of the storm. I'm only on oral antibiotics and have 3 more days of them until I get about a week and a half off to let my body relax a bit and then a phone appointment with my doctor to re-hash this last 4 weeks and then re-group for the next 4 weeks which might be more intense than the last. Oh boy am I afraid. But I need to not start getting ahead of myself and need to stay in the present. One foot in front of the other and enjoy the little joys of each day. My kids do provide plenty of those!</div>
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We had a fun 4th of July. I sat back the whole time while we had family over. They did everything - prepare food, take care of kids, provide fun. Still, it was taxing on my body. I had fun, I stayed mostly immobile, and while I wasn't incapacitated by seizures or nausea, fatigue and weakness were there. You can see it in my eyes:</div>
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<a href="http://2.bp.blogspot.com/-tvEEnXhFC3g/U7tDqc7z8rI/AAAAAAAAXX4/Ji2lAcltX_0/s1600/4th+of+July-70.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-tvEEnXhFC3g/U7tDqc7z8rI/AAAAAAAAXX4/Ji2lAcltX_0/s1600/4th+of+July-70.jpg" height="320" width="213" /></a></div>
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It's a disease that's hard to explain to some people because a lot of the time we don't LOOK sick. We look like we probably feel okay. Unless you're there in our most utter awful moments, we look like we could be you. But I've reached a point where I do look pretty bad. I walk slower, shuffling at times, and I am still having seizures. The doctor upped my seizure meds last appointment but it hasn't seemed to slow them. They haven't increased which is good, but they haven't decreased which is kind of disappointing. I have two kinds of seizures - one, the kind where I flail (the typical kind you'd see on tv or movies), and one where I pass out for up to 3 hours--that's my record--then groggily come out of it. Matt has to monitor my breathing and make sure I'm fine, giving me seizure meds even though I'm completely "out" (he puts them under my tongue where they dissolve very easily and absorb and go to work). It's scary, folks, but the doctors are aware and know fully what they are doing and are keeping close tabs on me so we don't feel alone in this.</div>
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<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="http://1.bp.blogspot.com/-Nuv7mB504A0/U7tDnmd9pCI/AAAAAAAAXXk/-Iibc-o6vFM/s1600/4th+of+July-102.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-Nuv7mB504A0/U7tDnmd9pCI/AAAAAAAAXXk/-Iibc-o6vFM/s1600/4th+of+July-102.jpg" height="320" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting fanned by a fallen palm frond by my bro</td></tr>
</tbody></table>
It's <i><u>not</u></i> hard to be off of my feet. It used to be. It used to be hard to sit and watch and wait and see things that needed to be done. Now I sit and am SICK and can do nothing but BE sick. My body won't let me be anything but sick and my mind won't let me be anything but sick. My mind is focused only on helping my body not fail completely most days. <br />
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My kids are here at home with me, but are taken care of by others. They come over to me for loves and hugs and to say "I love you, Mama" or "We prayed you would get better last night, Mama". It's a tag-team effort. Right now my cousin is in town and does so much of the daily work of caring for them and for the house (Matt does a lot of the house stuff too!). Then on top of that, I have one sister-in-law coming on Mondays, my mom coming on Tuesdays and Wednesdays, my sister coming on Thursdays, and my other sister-in-law coming on Fridays.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-YSSuvmIupNY/U7tDniJ_sKI/AAAAAAAAXX0/sIV_FRujMHY/s1600/4th+of+July-107.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-YSSuvmIupNY/U7tDniJ_sKI/AAAAAAAAXX0/sIV_FRujMHY/s1600/4th+of+July-107.jpg" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There's something irresistible about a little boy<br />
and a sparkler :) Especially MY boy :)</td></tr>
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I've had seizures when they've been here, I've also been awake and alert when they've been here and able to direct them as to how I'd like things done or where things put. We've been slowly moving into a new place since our move across the country so it's been a transition! A very slow one. Imagine a regular move and then imagine one with someone who is very very gravely ill. It takes more than double the time to get unpacked and put away because there are just so many hiccups along the path. Things are coming together but it really is just taking a while. My husband is a huge help and he is trying to make our home a place of peace for me and all of our family helpers have tried to do the same when they come over on their allotted days to help.<br />
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The 4th of July was fun, and even with all of the sitting back and resting, my body still paid dearly for all of the fun I had <i>not </i>doing anything much at all except observing and laughing and enjoying myself NOT exerting myself.<br />
<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="http://4.bp.blogspot.com/-7rPQqzjwaqU/U7tDnS6kNAI/AAAAAAAAXXg/n0HeolAZRLg/s1600/4th+of+July-137.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-7rPQqzjwaqU/U7tDnS6kNAI/AAAAAAAAXXg/n0HeolAZRLg/s1600/4th+of+July-137.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The fireworks display as seen from our house</td></tr>
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The day following the 4th I had a big seizure. I always wonder, "Was it worth it?" It usually is. Fun with family usually is worth it. And to keep it real, so you know that I don't always look like you or you or you, this picture was taken after a seizure - I'm not excited to share it, but I think it's important that people see that Lyme causes awful things to happen. This is what I look like after a seizure:<br />
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<a href="http://3.bp.blogspot.com/-NA53SAE3S5c/U7tDvvtUliI/AAAAAAAAXYI/LdGWi40mUyo/s1600/After+seizure+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-NA53SAE3S5c/U7tDvvtUliI/AAAAAAAAXYI/LdGWi40mUyo/s1600/After+seizure+2.jpg" height="400" width="225" /></a></div>
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Over on the right-hand side there, you'll see a fundraising site that my brother and his wife and a friend from their church have put together for us. We thank you so much! We just are blown away by those of you who have given to us already and so grateful!</div>
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I'll leave with this:</div>
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<i>"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12</i></div>
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<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560653015057357228.post-41530811774626663532014-06-29T15:52:00.001-05:002014-06-29T15:53:16.921-05:00out of the fog of nausea<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-vsQu4XEvILE/U7B8qtoGf0I/AAAAAAAAXXM/LChvs1OWI4Y/s1600/out+of+nausea.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-vsQu4XEvILE/U7B8qtoGf0I/AAAAAAAAXXM/LChvs1OWI4Y/s1600/out+of+nausea.jpg" height="320" width="180" /></a></div>
This past week was one where I didn't know which way was up and where I sucked on pineapple popsicles til my tongue hurt. One particular IV med I was on causes severe nausea and even with multiple anti-nausea meds, the nausea was barely contained all week. It was miserable, awful, sorrowful, pitiable...<br />
<br />
But then this:<br />
<br />
<i>"the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my harms can bend a bow of bronze. You have given me the shield of your salvation, and your right hand supported me. And your gentleness made me great. You gave a wide place for my steps under me, and my feet did not slip." Psalm 18:32-36</i><br />
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and this:<br />
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<i>"Now may our Lord Jesus Christ himself, and God our Father, who loved us and gave us eternal comfort and good hope through grace, comfort your hearts and establish them in every good work and word." 2 Thessalonians 2:16-17</i><br />
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And look as this gem my aunt found. So fitting right now and I'll leave it at that since I'm pretty weak still:<br />
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"The highest result of prayer is not deliverance from evil, or the securing of some coveted thing, but knowledge of God… “And this is life eternal, that they should know Thee, the only true God"(John 17:3)…" --from The Kneeling Christian<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560653015057357228.post-75896111201058773862014-06-24T17:02:00.000-05:002014-06-24T17:02:28.505-05:00done in<div class="separator" style="clear: both; text-align: left;">
It has been so tough. But my prayers have been that these tough days and yucky feelings will be accomplishing much to rid my body of Lyme and let me get back to a place where I can be a mommy again. We've got the first 4 weeks under our belt. Boy, what a learning curve that was! Thankfully we had my sister-in-law and brother-in-law to help us along when we had no clue what to do in certain situations. I'm sure they thought we were nuts sometimes but we are so grateful for their help and knowledge since they've walked this path before us and now are currently walking it again!</div>
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This is what my line and dressing looks like:</div>
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<a href="http://1.bp.blogspot.com/-M1HFU0xQsiU/U6nvznNgJtI/AAAAAAAAXVM/vWTRdpHIgOM/s1600/violet.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-M1HFU0xQsiU/U6nvznNgJtI/AAAAAAAAXVM/vWTRdpHIgOM/s1600/violet.jpg" height="320" width="180" /></a></div>
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The dressing can't get wet because if it gets wet, the skin under the dressing (which is sterile), becomes compromised and is no longer sterile. Therefore, showering becomes a problem. At our first appointment they told us to use Glad Press N Seal. I said, "You mean you just stick it on and you can hop in the shower?" Yes, they said. "And the water can just run right on you?" Yes, they said. "And it's fine?" Yes, they said. So that very first night my hair needed to be washed. I put Glad Press N Seal on and it looked as though it would hold, hopped in the shower, and washed my hair. Got out and inspected the dressing. It held up well EXCEPT for the side. OH MY...I panicked. It was wet. The Press N Seal had failed me. It was time to put Matt to the test in his dressing change skills (after the dressing is compromised it must be changed immediately to keep the site from infection). Matt did very well, by the way.</div>
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Anyhow, after that experience Matt emphatically told me I was no longer allowed to shower. Telling that to a girl is like telling a pig they can't wallow in mud. Spencer and Melody (bro and sis-in-law) told us about this handy device:</div>
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<a href="http://ecx.images-amazon.com/images/I/31BN824V2KL.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://ecx.images-amazon.com/images/I/31BN824V2KL.jpg" height="198" width="320" /></a></div>
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and let us borrow it - it attaches to your bathroom sink (or any sink) and works really well while sitting in a wheelchair, but any chair will do. Matt washed my hair for me. When it worked, he wrapped the towel around my head and said, "Go buy it on Amazon now." So it's bird baths and Matt washing my hair for me until my PowerLine is out. I've gotten used to it. Some days my hair is funkier than I'd like because Matt doesn't have time to wash it so I go an extra day or two between washings but I've gotten used to large head-wrap headbands and just not caring because, really, all I can care about these days is surviving.</div>
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We have begun the next 4 week segment of my treatment and boy is it already rougher than the last. I'm only a day and a half in and I can barely move. Thankfully I have help at the house because I couldn't get out bed this morning without assistance, so getting the kids up and getting them breakfast wouldn't have worked if I was alone. </div>
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Please continue to pray that God would use these IV meds to rid my body of Lyme and get me back to stellar health. My family needs me back into normal health and I am just so ready to be well again!</div>
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I've had the sidebar updated with ways to help for those interested. Most of all we covet your prayers. We know those go a long way!</div>
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<br /><div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4560653015057357228.post-23695552110055785522014-05-30T11:32:00.000-05:002014-05-30T15:31:07.806-05:00IV'ed<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-CDaVCDoKXQo/U4iwh8mh4iI/AAAAAAAAXLg/Z8BJgWZch3M/s1600/iv+pic.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-CDaVCDoKXQo/U4iwh8mh4iI/AAAAAAAAXLg/Z8BJgWZch3M/s1600/iv+pic.jpg" height="400" width="225" /></a></div>
Wow. I've nearly added one week of IV antibiotics under my belt and I've been womped pretty hard. I'm taking oral antibiotics congruently so that doesn't help how I feel either, but WOW. IV is a whole other ballgame.<br />
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My eyes are sunken, I can barely walk, I'll think of something I want that is just out of reach and then decide to just wait because it's too much energy to sit up and reach for it - whew! This stuff is potent; and that's good! But I hate it at the same time.<br />
<br />
So some people name their IV line. It helps them through it or something. I thought I wouldn't, but then a name popped into my head and it fit perfectly and it bonded me to my line and made me LIKE it more than I ever would and endeared it more because I have sort of been scared of it this whole time. I shall name it <i>Violet</i>. It's purple so it fits. It may sound silly to most of you, but to those of you who have had PICC lines or PowerLines or Ports to receive antibiotics, you know how much it helps to have that name that makes you love the thing that is helping you get well. I'm not batty. I'm crazy, but not batty, all you friends out there. Don't worry, I haven't crossed over.<br />
The procedure itself was not what I expected. "Conscious sedation" was something altogether different than what I imagined. I was very much aware of everything they were doing when inserting the line. But I was sedate. So there you go. Just what it says - conscious but sedate. Then off to the clinic we sped to make our appointment to learn how to change the dressing and also test dose the medications and lo and behold all of this was just too much on my poor body and I ended up having a mega seizure right there on the exam table. Passed out and everything. My husband said they got really worried, but after some very special medication was pushed into my line, (and after I had already maxed out on my regular seizure meds), I came to and things got normal again and calm. Scary times. Seizures are never normal for us and never not scary. But the rest of the weekend we spent in DC went fine as I recovered from the procedure and Matt is prepared to be my nurse. Interestingly enough, 2 nurses I had in pre-op had Lyme disease and my surgeon had Lyme disease 13 years ago and said, "We're rooting for ya!". It's prevalent, folks! It really is!<br />
<br />
Life is hard hard hard right now. We are still in-between houses. We finally closed escrow and are painting our new house. "We" is my husband and my siblings (SO thankful for them!). I sit and watch. My mom and dad babysit our kids. We are so grateful for everyone helping. Once the painting is done (maybe this weekend?) we can move our stuff in and finally be done with our very haphazard living situation we're in. Things will calm down.<br />
<br />
And I get help!! My aunt is sending my very mature nearly college age cousin to come stay for a couple months to help with the kids. We are so blessed and God is taking care of us. And we have help from my sister who will come once a week to relieve my cousin, and help from my two of my sister-in-laws, and my mom gets to come for 2 days a week and offers from many others. I will say yes to whoever I can that will be helpful and not harmful to my health. We need any help we can take at this point.<br />
<br />
My dad accompanied me to my son's well check appointment which helped immensely. I couldn't have done it by myself. I can barely walk for goodness sake! He carried my son and did everything that needed to be done for my son (my son LOVES his Appah!). I had the worst memory problems there filling out the forms, but made it through so I'm so glad I didn't have to wrangle a child AND fill out forms.<br />
<br />
God's grace and goodness are abounding through this trial and we pray and hope that these IV meds are what will get me back into perfect health! Thank you for praying for me!<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-4560653015057357228.post-4101760286695543902014-05-02T11:41:00.000-05:002014-05-02T22:15:17.749-05:00ready<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-vMN1i5YLMfs/U2PHOiv73EI/AAAAAAAAXIk/wHOPWlvaZo0/s1600/clouds+1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-vMN1i5YLMfs/U2PHOiv73EI/AAAAAAAAXIk/wHOPWlvaZo0/s1600/clouds+1.jpg" height="320" width="180" /></a></div>
It's taken me a bit to digest the information I got at my last appointment. I was in bad shape. Afternoons are really bad for me. Mornings are good. I sometimes have a pep in my step even! Then as the day wears on I sink lower and lower and lower until I'm reduced to shuffling along (if I can walk at all). I can barely manage a smile. <br />
<br />
Lately, though, through tough news, I'm thankful for the late night laughs my husband and I have had. They've been much needed. Laughs about ridiculous things. I think we both just are punch drunk and delirious with overwhelmed crazy information overload that things that normally wouldn't be funny become hilarious to us and we lay on the bed laughing til we cry. Thank you, Lord. Laughter really is the best medicine.<br />
<br />
But back to my appointment. I was thankful in a way, that my appointment was in the afternoon, because then the doctor could see me at my worst. Not that they don't take me seriously; in fact, they are the kindest doctors I've ever encountered. They believe every word I say because they've seen it in countless patients and they fight for us. Another huge blessing and thing I'm thankful for - doctors who fight for a chronic disease that most doctors gloss over or decide doesn't exist.<br />
<br />
See me at my worst they did. It was meant only for my main doctor to see me but the big guns had to be brought in. She brought in Dr. J. They conferred. We discussed. I was laid on the exam table because of all the shaking that was happening in my body ("we don't want you to have a seizure") and the lights were dimmed. I had to lay there for an hour and a half before I was cleared to leave. I was actually fine with this. I was so so so fatigued and worn that my body needed that dark room and table to recline on.<br />
<br />
Before the exam table we discussed things. We discussed the last 4 months; symptoms and such. I had <br />
trouble getting words out. She could tell I was having trouble. When she "poked and prodded" me (her words) as per the usual exam, my body did all sorts of weird things I couldn't control.<br />
<br />
My body is not mine - it's Lyme's. Clearly I'm not winning this war. If ever I was, I'm not anymore. And after very careful thought and deliberation it was decided that I need to go on I.V antibiotics. Funny enough, in office, I was so very calm about this decision. I was pumped up about it. I was happy. Yes, a single, sad tear slipped down my cheek as she said the words "I.V treatment". The lights were dimmed so I don't know if Doctor saw it. But overall, I knew this is probably what my body needs to get over the hump of not being able to get better. Dr. J came in to discuss it with me too and we both agreed - I'm TIRED of being sick! This is what is needed, no doubt about it.<br />
<br />
<a href="http://1.bp.blogspot.com/-y6gIMdrTCaA/U2PJjPoq0bI/AAAAAAAAXIw/vFemHtTbNrg/s1600/trees.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-y6gIMdrTCaA/U2PJjPoq0bI/AAAAAAAAXIw/vFemHtTbNrg/s1600/trees.jpg" height="320" width="179" /></a>It WILL be rough. Rough in so many aspects, not just on my body but on the family, on the finances, on those around me who have offered to help. Lyme affects so many without people realizing it.<br />
<br />
But here are the truths - the things that make me sit up straighter and breathe easier when I'm up late at night fretting:<br />
<br />
-I.V wasn't mentioned until we moved to where we are surrounded by family of all different kinds - parents, siblings, etc. We have a great support network. Even friends have offered help. People we hardly know have offered help! God's hand in timing this is so evident.<br />
<br />
-All money is God's. It's all His. So why do we worry? He will provide for our needs. Doesn't mean it won't be slim and hard, but we need not worry for He cares for us.<br />
<br />
-God will be with me through the toughest parts of treatment. He's been with me through the toughest parts of oral antibiotic treatment and He won't abandon me now. The scary thoughts of "what if" and "what is it going to be like" dim when I dwell on His presence.<br />
<br />
-We already have offers to help take care of the kids that should span the hours of my husband's work schedule so that I won't be left alone with them (seeing as I have fainting spells and seizures at any given moment....something the doctor is working hard to remedy before I start I.V, but things change with new I.V drugs so we'll see!).<br />
<br />
So, all of this is set to start in a few weeks! It is all happening very quickly and moving at such a fast pace that I can hardly contain my thoughts sometimes. But prayer and snippets of God's Word helps. It's hard for my brain to be able to sit down and read large passages of any kind of book, but I do find it comforting to go to the Psalms. They seem to be the perfect length for an overworked/overrun-with-Lyme brain.<br />
<br />
<div style="text-align: center;">
<span style="background-color: white; line-height: 18px;"><i><span style="font-family: inherit;">"I will rejoice and be glad in Your loving kindness, because You have seen my affliction; You have known the troubles of my soul, and You have not given me over into the hand of the enemy; You have set my feet in a large place." Psalm 31:7-8</span></i></span></div>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-tPPPYt_Yqz8/U2PJ2AVB55I/AAAAAAAAXI4/jRndvkERJ8M/s1600/clouds+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-tPPPYt_Yqz8/U2PJ2AVB55I/AAAAAAAAXI4/jRndvkERJ8M/s1600/clouds+2.jpg" height="640" width="360" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The clouds on the flight home</td></tr>
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<span style="background-color: white; line-height: 18px;"><i><span style="font-family: inherit;"><br /></span></i></span></div>
<br /><div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-4560653015057357228.post-49005304812645056352014-03-08T19:33:00.003-06:002014-03-08T19:33:49.729-06:00exposedDirty closets. Literally....<br />
<br />
We are moving. It happened SO fast. Moving from the middle of America to the coast of America. You know what that means? It means moving from a BIG house to a <i>little</i> house. So naturally, as I lay on the couch unable to even care for my own kids, my mind races thinking of all the things needed to be done before the movers come to pack up the place. So much purging must be done! I don't want to arrive at a smaller place and have to live in cramped quarters. I'd rather get rid of it now and breathe easier when we get there.<br />
<a href="http://2.bp.blogspot.com/-070qQhoE55k/UxvDkCjnXDI/AAAAAAAAW1U/FqNJt0HiXFs/s1600/dallas-38.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" src="http://2.bp.blogspot.com/-070qQhoE55k/UxvDkCjnXDI/AAAAAAAAW1U/FqNJt0HiXFs/s1600/dallas-38.jpg" height="200" width="133" /></a>But it poses a problem because as I said, I can't even care for my own kids. So how can I methodically go through my house and purge?<br />
<br />
(Side note for those of you that don't know or don't remember - my mom has graciously moved in with us and is taking care of the kiddos for the majority of the time until my husband gets home from work each day and she also cares for me! How grateful we are!)<br />
<br />
There was a good day a week or two a go when my mom took all the kids out to the zoo and I decided to purge the toys. That is something that can't be done with kids around. I was running on adrenaline and once that was done I decided that I could conquer the girls' closets. Which I did. I paid for it dearly, though. The next day I had a seizure, passed out for most of the day and it was just an all around bad, scary day. My husband was scared and has been oh so careful with what he'll allow me to do since then.<br />
<br />
So enter my bff. She has been so faithful to pray for me and step in when things are needed. She doesn't know anyone with Lyme disease but she sure knows how to care for someone who has it. She just brings a meal at the right time, takes the kids at the right time, comes up with great ideas for how to help at the right time....it's been wonderful. She's also a great encourager. That's something every Lymie needs. I gets notes all the time and encouraging sermons she's heard that she'll pass along, etc. <br />
<a href="http://3.bp.blogspot.com/-zzJiRoXqfcM/UxvDi1Ctx1I/AAAAAAAAW1M/D4csHCS-R4E/s1600/dallas-10.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-zzJiRoXqfcM/UxvDi1Ctx1I/AAAAAAAAW1M/D4csHCS-R4E/s1600/dallas-10.jpg" height="212" width="320" /></a><br />
Well, she heard that I've been fretting and getting anxious about this whole purging thing. So she set up a babysitter for her own little one and then came over to help me go through a couple of closets with me. I honestly thought we'd only get through the linen closet and I was happy about that because the other closet to go through was in my room and my room is a mess. And that closet had who knows WHAT stuffed in it. I was scared to let her in.<br />
<br />
But she KNEW what to do. She set up a chair and made me sit. I wanted to do more but she wouldn't let me. She had me say what to keep and she put it in a pile and she had me say what to give away and she put it in a pile. Then she folded all the "keeps" and put them neatly in the closet. She MADE me just sit and watch and not lift a finger. She knew my body would pay for it and she wouldn't let it happen on her watch.<br />
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Then she said she had time for one more task so we looked around and tackled another semi-big project and again she made me sit and bark orders while she did the heavy lifting (and it really was heavy lifting because it involved books!).<br />
<br />
<a href="http://4.bp.blogspot.com/-wGFd4XZMnRI/UxvDhyAFS7I/AAAAAAAAW08/gNmibrhOeXw/s1600/dallas-21.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" src="http://4.bp.blogspot.com/-wGFd4XZMnRI/UxvDhyAFS7I/AAAAAAAAW08/gNmibrhOeXw/s1600/dallas-21.jpg" height="320" width="213" /></a>What a wonderful friend! I find it's so hard to make the kind of friend that you feel comfortable around enough to be <i>sick</i> around. She's seen me have a seizure. I seriously thought she wouldn't want to be my friend anymore after that. I know it's ridiculous because no one is that shallow, right? But I was super embarrassed. It's a vulnerable thing to have a seizure in front of someone. But the next time I saw her she just brought it up and said something along the lines of "I'm praying for you and don't think anything is weird between us" or at least something that made me feel that way. That's what you should go for. I'm really going to miss her dearly.<br />
<br />
We had a sleepover the other night because her husband was out of town and my husband felt comfortable letting me go hang out overnight there since she's so comfortable with Lyme. There was no pressure to make it "fun". We just sat, laughed at her little baby son's antics, sat some more, watched a really old Disney movie, and made decaf affagatos then went to bed. She gave me HER bed. The comfy one. She took the guest bed.<br />
<br />
She prefers OTHERS as more important than herself. She lives out Scripture. She's the kind of friend I hope to keep forever (we already are in cahoots to plan a way to see each other in December maybe).<br />
<br />
Everybody needs this kind of local friend. Especially a Lymie.<br />
<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="http://4.bp.blogspot.com/-7EMp_6t33YQ/UxvDiWXObwI/AAAAAAAAW1E/qiQoGtrlsL0/s1600/dallas-17.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-7EMp_6t33YQ/UxvDiWXObwI/AAAAAAAAW1E/qiQoGtrlsL0/s1600/dallas-17.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All of these pictures were taken when she and I went to the Dallas Arboretum; a trip where we had to cut a lot of fun things off because of how I was feeling. But she was so kind and so loving and really understood!</td></tr>
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<div class="blogger-post-footer"><div id="fb-root"></div><script src="http://connect.facebook.net/en_US/all.js#appId=251720271512043&xfbml=1"></script><fb:like href="http://www.todayifeelexceptionally.blogspot.com" send="true" width="450" show_faces="true" font=""></fb:like></div>Unknownnoreply@blogger.com0