tag:blogger.com,1999:blog-51698407538805570832024-03-13T22:51:44.332-07:00Life and LiberationDiagnosis with MS - how does one successfully navigate that devastating blow? With lots of patience, support from loved ones and God's grace. This is my documented journey on the road to liberation from the grasp of MS -- from CCSVI treatment to the redefining of my character. My prayer is that one day I will hear "Well done, my good and faithful servant". (Matt. 25:23)Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.comBlogger152125tag:blogger.com,1999:blog-5169840753880557083.post-87131333212625764932014-12-16T19:31:00.000-08:002014-12-16T19:51:19.646-08:00I am still alive!Twenty months. It's hard for me to believe it has been that long since I've last written. It literally feels like just a few months. So little has happened in that time - and yet so much as happened as well.<br />
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In December of 2013 doing routine errands around town, a man in a car (leaving Starbucks with coffee in hand whilst driving) left the parking lot and t-boned our van while we were driving along oblivious to the challenges our lives would soon experience. The impact was so strong that my son's glasses flew off his face and the door of the storage compartment between the driver and passenger seats slid open and the contents flew around the van. We said goodbye to our beloved Previa that day, as well as our innocent trust in drivers around us.<br />
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The kids were in the van at the time and were quite fearful to get back into vehicles again, but I pressed on, knowing that it was the best thing for all of us. We picked up our rental vehicle within the hour and kept on with our lives, and the challenging task of figuring out how to replace our Previa.<br />
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Slide forward a few months into January of 2014. All is well. We have a replacement vehicle, we just finished a wonderful Christmas with family and I thought the horizon looked brighter. The kids were not as fearful as they were in the weeks following the accident, and I felt like we could put this all behind us successfully. This was not to be so. On January 4, 2014 while driving on a popular city road in the inner lane, a truck apparently decided that he "thought he could make it" and turned in front of me. Already being on high alert to drivers due to the first accident, I had already been watching him as I approached him on the road. As he turned in front of me, my thoughts were filled with shock and amazement that someone would even try this feat. I immediately turned left to avoid a head on collision and we hit on our front right corners. This, in retrospect, was a gift, as in the front corner of vehicles, the airbags aren't triggered. I can only imagine what recovery would be like in a collision where airbags are deployed. Immediately I felt pain in my neck and back and knew I would be in trouble physically, with compounding injuries from the first MVA. The kids were screaming in terror for having experienced this twice within a few months. I knew at that moment that our emotional recovery was now far from over. <br />
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One year later, December 2014, and the kids still vow they will never drive a car. They are untrusting of every driver on the road. They constantly watch traffic and quote when vehicles are "over the line" or are swerving. It's not right for little kids to be watching traffic every time we drive somewhere. Fear is a very powerful thing. It is getting better - albeit ever so slowly. I try to give the children activities in the van to keep them distracted as much as possible which really seems to help. I keep praying that God will heal the painful memories and that they will be able to be confident drivers one day. <br />
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With one year post-first accident, I thought I was starting to show some improvement, until around a month or two ago I started to get numbness and pain in my left side, and my headaches, neck and back pain started to greatly increase. I honestly thought my MS was starting to wreak havoc on my body. Time for a checkup with the neurologist. It had been awhile. One MRI and follow-up later, my MRI showed no changes within the past few years -- STABLE! What did that mean? All issues ARE related to the MVAs and therefore treatable! That was good news, even though it means I continue to live with pain that challenges my daily attitudes when I deal with kids and other responsibilities. <br />
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I've learned it's a tough road to live with chronic pain. Some days, you find yourself at the end of your rope and you really don't know why. It's then that you realize that your pain has been screaming at you all day, and your ignorance of it only just drained you further. I'm going to have to try a new strategy. Instead of trying to convince myself that I'm capable of doing anything I put on my to-do list, I think a new plan of realizing I have limitations, albeit temporary, will greatly help my emotional state and therefore bring about more productive days. My brain still lives in 1984, when I could accomplish the to-do list of three people. Emotionally I struggle with the physical loss that the MVAs have dealt, but I'm fighting to keep the hope that this is temporary and that I will see resolution, both physically and emotionally.<br />
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One minute at a time. Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com2tag:blogger.com,1999:blog-5169840753880557083.post-12349387407452009492013-04-30T10:03:00.001-07:002013-04-30T10:03:35.111-07:00Calling<span style="font-size: x-small;"><span style="font-family: Verdana,sans-serif;">Early morning coffee (yes, I found an organic coffee that doesn't kill me), cuddling with kids in bed, and groggily reading through <span style="font-size: x-small;">Facebook</span> posts on my micro, teeny weeny iPod, I came across a post which hit me hard. It was entitled "Parenting is Kingdom Work" (it can be found <a href="http://www.incourage.me/2013/04/parenting-is-kingdom-work.html" target="_blank">here</a>)</span></span><br />
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<span style="font-size: x-small;"><span style="font-family: Verdana,sans-serif;">As a stay at home mom, busy with homeschooling and everyday life as well as
multiple sclerosis, for some time I have felt that I am falling short on my
calling. Sometimes just getting what <span style="font-size: x-small;">needs to be done during the <span style="font-size: x-small;">day feels like running a marathon. </span></span>Sure, I love my kids and they "know" it. Yet when I flop in bed
exhausted each night, very aware that only half of my daily to do list
has been checked off, I feel as though I have missed the mark --
eternally. Just as one knows the importance of daily exercise yet
struggles to incorporate it into each day's r<span style="font-size: x-small;">outine</span>, I struggle with teaching my
children what matters most. "If only I had an extra 12 hours today", I
sigh. As a child, my parents were very busy, trying to support our household, and I
was often left on my own, as mentioned in <span style="font-size: x-small;">that post</span>. How does one retrain one<span style="font-size: x-small;">'s</span>
mind and change it here and now? I have felt this conviction for years
now, but feel stuck and overwhelmed in my physical weakness.</span></span><br />
<span style="font-size: x-small;"><span style="font-family: Verdana,sans-serif;"> <span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"> </span></span></span></span></span><br />
<span style="font-size: x-small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">I hope there is a book out there that gives helpful advice on how to manage <span style="font-size: x-small;">this with <span style="font-size: x-small;">minimal energy. I'm sure there is .. <span style="font-size: x-small;">somewhere.</span></span></span></span></span></span></span></span><span style="font-size: x-small;"><span style="font-family: Verdana,sans-serif;"> My prayer is that I can find <span style="font-size: x-small;">ways to <span style="font-size: x-small;">push past my <span style="font-size: x-small;">tiredness and lead by example. </span></span></span></span></span><span style="font-size: x-small;"><span style="font-family: Verdana,sans-serif;"> </span></span>Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com6tag:blogger.com,1999:blog-5169840753880557083.post-7343103258873509352013-02-24T09:26:00.001-08:002013-02-24T11:17:23.175-08:00Another Door<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">Walking down the aisle of the grocery store, it hit me. I have MS! Where did that come from? Years later, the realization of this disease still hits me square in the face, just like that first day in my doctor's office where I heard the "I'm sorry, your spinal tap shows positive for Multiple Sclerosis". Why is it that it still feels like a dream, rather like I am watching a movie of someone else's life? "Surely, this cannot be reality". Sadly, it is.</span></div>
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<span style="font-family: Verdana, sans-serif;">At times you settle into the normality of it all and plug along in your day-to-day tasks, adjusting your calendar to match your current strength (both physical and emotional). I think that's when you can almost forget that this disease is tagging along for the ride -- when you stop thinking about it and go about your daily routine. You move from task to task, focusing on all that needs to be done, and that is when those sharp realizations flash into your head of "Pssst, remember, you have MS". Crap, I had almost forgotten to think about it .. thanks (NOT!) for the reminder. You relish those moments that you "forgot" ... you almost feel normal at that point, like all those other blessed people walking around that you so desperately want to be like. Don't get me wrong, the disabilities still reside within you .. you still experience them, but they almost become your new normal... to the point where you adjust to compensate for them and it becomes second nature -- you just don't think about them (momentarily). </span></div>
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<span style="font-family: Verdana, sans-serif;">It seems that the more I try to find a solution for this wretched road I am on, the more my body seems to react. I have tried several of the "injection" type of drugs that are recommended for MS. Each one made me so very sick to the point of not being able to get out of bed. So, at this point, I am not on any MS medication, and believe me, I am glad. Last Fall was a very dark period of time for me physically due to the drugs. I also took a Lyme test which came back inconclusive -- neither negative nor positive (really?). "Further investigation required", I am told. This MS road is constantly winding and around each corner, you think you will find answers, but they are only one mirage after another. Maybe there are no answers? </span></div>
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<span style="font-family: Verdana, sans-serif;">I started feeling "off" every time I drank coffee, so I cut that out. I loved that morning ritual of drinking a nice hot cup of coffee to start my day. So many things I've had to "cut out" ... could I not at least keep coffee? I don't eat sugar, gluten, dairy, preservatives. The list goes on. MS just seems to take and take. On the other hand, it does give a lot too. It gives me the opportunity to learn to receive (I'm not too good at receiving gifts and help). It gives me humility -- I've had to learn to say "I can't" (I'm a slight over-achiever).</span> <span style="font-family: Verdana, sans-serif;">It's given me the ability to appreciate the smallest of things, and to not take anything for granted. It's shown my kids that life is not all about "what you want" ... life is a road of good AND bad (I grew up thinking that as you got older, life got easier -- I was in for a rude awakening). MS has given me eyes to see the pain of other people, rather than to just look away. </span></div>
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<span style="font-family: Verdana, sans-serif;">So, what's happening right now? I am not on any MS drugs, nor do I want to be. The options are too scary and I've already written off 2011 with that "experiment". I will continue to research ways to help my body heal as much as I can. I will continue to pray for God to take this from me. I will continue to pray that my kids can deal with the pain of how MS affects them personally. One - step - at - a - time. I cannot even think beyond today. If I do, fear lurks at my mind's door about what the future holds, and what it will take away. </span></div>
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<span style="font-family: Verdana, sans-serif;">Today I choose to look at my blessings -- to focus on what I have. I hear fear knocking at my door constantly. If I even turn to answer, it will gain such a hold that it will be hard to recover from. I will choose another door. </span></div>
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<span style="font-size: x-small;"><b>"Need You Now (How Many Times)"</b></span>
<span style="font-size: x-small;"><br /></span><br /><br />Well, everybody's got a story to tell<br /> And everybody's got a wound to be healed<br /> I want to believe there's beauty here<br /> 'Cause oh, I get so tired of holding on<br /> I can't let go, I can't move on<br /> I want to believe there's meaning here<br /> <br /> How many times have you heard me cry out<br /> "God please take this"?<br /> How many times have you given me strength to<br /> Just keep breathing?<br /> Oh I need you<br /> God, I need you now.<br /> <br />Standing on a road I didn't plan<br /> Wondering how I got to where I am<br /> I'm trying to hear that still small voice<br /> I'm trying to hear above the noise<br /> <br />How many times have you heard me cry out<br /> "God please take this"?<br /> How many times have you given me strength to<br /> Just keep breathing?<br /> Oh I need you<br /> God, I need you now.<br /> <br /> Though I walk,<br /> Though I walk through the shadows<br /> And I, I am so afraid<br /> Please stay, please stay right beside me<br /> With every single step I take<br /> <br />How many times have you heard me cry out?<br /> And how many times have you given me strength?<br /> <br />How many times have you heard me cry out<br /> "God please take this"?<br /> How many times have you given me strength to<br /> Just keep breathing?<br /> Oh I need you<br /> God, I need you now.<br /> <br /> I need you now<br /> Oh I need you<br /> God, I need you now.<br /> I need you now<br /> I need you now </div>
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Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com3tag:blogger.com,1999:blog-5169840753880557083.post-22522787180400004532012-11-07T14:55:00.002-08:002012-11-07T19:29:45.825-08:00The End of Avonex<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><u>W</u><span style="font-size: small;"><u>ARNING</u>: This update is not for the faint of heart ... <span style="font-size: small;">I'm hoping my next <span style="font-size: small;">update</span> wil<span style="font-size: small;">l be more encouraging and pos<span style="font-size: small;">itive.. This one<span style="font-size: small;">;<span style="font-size: small;"> ho<span style="font-size: small;">wever, i<span style="font-size: small;">s <span style="font-size: small;">giving a window in<span style="font-size: small;">to my life at this <span style="font-size: small;">mom<span style="font-size: small;">ent<span style="font-size: small;">, with no cand<span style="font-size: small;">y<span style="font-size: small;">-coating. <span style="font-size: small;">I don't want to offen<span style="font-size: small;">d with my ne<span style="font-size: small;">gativity .. yet I need to be real. I still look forward t<span style="font-size: small;">o a brighte<span style="font-size: small;">r day ...</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> <br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">It has been nearly four months since I have posted an update. Normally, I also keep a private 'health log' for my own personal records of how I fair each day. There <span style="font-size: small;">are no logged personal records for the past few months either. Frankly, I have <span style="font-size: small;">not been well enough to do m<span style="font-size: small;">uch other than focus on <span style="font-size: small;">keeping my kids fed and somehow remembering to pay the bills be<span style="font-size: small;">fore the power gets turned off in the home<span style="font-size: small;"> (although once it was close!).</span></span></span></span></span></span></span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">In the beginning (<span style="font-size: small;">July 2012)</span>, the weekly Avonex inj<span style="font-size: small;">e<span style="font-size: small;">ctions weren't <span style="font-size: small;">too diff<span style="font-size: small;">icult, I would feel flu-like sym<span style="font-size: small;">ptoms for the first 3-4 days, which I felt was par for the course as my body never really does thing<span style="font-size: small;">s the way the "normal" person do<span style="font-size: small;">es. The normal course of <span style="font-size: small;">treatment is to do 1/<span style="font-size: small;">4 shot first, then 1/2, then 3/4 and then up to <span style="font-size: small;">full dose. However, as I didn't respon<span style="font-size: small;">d <span style="font-size: small;">well to the 1/4 d<span style="font-size: small;">ose, <span style="font-size: small;">my n<span style="font-size: small;">eurologist ha<span style="font-size: small;">d me stay on 1/4 do<span style="font-size: small;">se until I <span style="font-size: small;">stopped reacting strongly. I didn't really cooperate, however, and by mid</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;">-<span style="font-size: small;">August <span style="font-size: small;">we were due to be on<span style="font-size: small;"> holidays for 2 weeks and </span></span>I knew I w<span style="font-size: small;">ould not be able to do the <span style="font-size: small;">injections myself. The office agree<span style="font-size: small;">d to <span style="font-size: small;">let me take a two week <span style="font-size: small;">vacation from my injections. HOORAY! We had a wonderful <span style="font-size: small;">two week vacation away from bills (ha ha, those would come later <span style="font-size: small;">once again), responsibilities<span style="font-size: small;"> other than making meals,<span style="font-size: small;"> and I was just all<span style="font-size: small;">owed to relax and be at <span style="font-size: small;">peace</span>! It took awhile for my body to feel a little better, but by the se<span style="font-size: small;">cond week (which was <span style="font-size: small;">at Long Beach, WA), I was feeling wonderful (as wonder<span style="font-size: small;">ful as <span style="font-size: small;">I can get at th<span style="font-size: small;">is point, that is). Just staring at the ocean all day, playing with the kids in t<span style="font-size: small;">he sand (YES!! I actually had energy to PLAY!), and just being with my family with<span style="font-size: small;">out stre<span style="font-size: small;">ss was so life-giving. It makes <span style="font-size: small;">me wonder <span style="font-size: small;">what the keys are to this whole thi<span style="font-size: small;">ng -- is it less stress? Is it the clean ocean breeze?</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">Once back home in early September, life got back into the crazy <span style="font-size: small;">schedule that it always reverts to, and of course, the Avonex was back into my life. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">I <span style="font-size: small;">started with the 1/4 dose again each Friday, and then after a <span style="font-size: small;">few weeks of that I <span style="font-size: small;">decided to start t<span style="font-size: small;">rying t<span style="font-size: small;">he 1/2 <span style="font-size: small;">dose. I really didn't want to enslave my sister (who gives me the s<span style="font-size: small;">hots) into a life of every Friday morning <span style="font-size: small;">having to <span style="font-size: small;">trave<span style="font-size: small;">l to my house to be my nurse. I HAD to try to at least eventually work my way <span style="font-size: small;">up to full dose. Onc<span style="font-size: small;">e at full dose, I would be able to <span style="font-size: small;">give the shots myself, as it is a self-injector pen where <span style="font-size: small;">you do not see the nee<span style="font-size: small;">dle. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">I would have <span style="font-size: small;">some days <span style="font-size: small;">where I could accomplish<span style="font-size: small;"> my goa<span style="font-size: small;">ls for the day, but most days have only a few hours of productivity. <span style="font-size: small;">Undoub<span style="font-size: small;">t<span style="font-size: small;">edly at </span></span></span>some point during the day my body would drain of all energy and I would be out of commission once again. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"> After <span style="font-size: small;">a few <span style="font-size: small;">weeks on 1/2 dose, I started to <span style="font-size: small;">really feel <span style="font-size: small;">very weak and "horrible". There really is no good way to describe it. Upon the th<span style="font-size: small;">ird <span style="font-size: small;">shot at 1/2 dose</span>, it <span style="font-size: small;">threw me in bed for three days without being able to move much. I realized then I had made a mistake and asked to go back to 1/4 dose. Talk about feeling like a loser.. Here I am having a few months of constantly being sick and in bed, feeling horrible and am still only able to do 1/4 dose? I<span style="font-size: small;">t felt like I would never get back to a normal <span style="font-size: small;">daily routine <span style="font-size: small;">again. I took the n<span style="font-size: small;">ext week's shot off <span style="font-size: small;">of my sch<span style="font-size: small;">edule </span></span>as when the Friday cam<span style="font-size: small;">e around, I was still in bed and unabl<span style="font-size: small;">e to even att<span style="font-size: small;">empt another<span style="font-size: small;">. The following wee<span style="font-size: small;">k I started up<span style="font-size: small;"> with 1/4 <span style="font-size: small;">dose again. That weekend was not too bad. I was able to actually go <span style="font-size: small;">out (with lots of Tylenol and Advil) and do scheduled activities. <span style="font-size: small;">However, by Tuesday, <span style="font-size: small;">I could feel my decline. I had another shot again the <span style="font-size: small;">following </span>Friday, and that is when things t<span style="font-size: small;">o<span style="font-size: small;">ok a turn for the worse. <span style="font-size: small;">On Saturday I crashed in bed<span style="font-size: small;"> and<span style="font-size: small;"> again couldn't move much ... <span style="font-size: small;">and here we are <span style="font-size: small;">at Wednesday, and I'm barely functioning. Last night I thought<span style="font-size: small;"> .. "I wonder if this is what it's like to be dying". I <span style="font-size: small;">felt <span style="font-size: small;">as though I was being poison<span style="font-size: small;">ed <span style="font-size: small;">and the to<span style="font-size: small;">xic feeling has prevented me from sleeping much at all </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span>for the past <span style="font-size: small;">four</span> days. Yesterday, I<span style="font-size: small;"> called my n<span style="font-size: small;">euro office and explained my symptoms and she told me to STOP all injections. "Clearly, <span style="font-size: small;">bet<span style="font-size: small;">a<span style="font-size: small;">serons aren't for you". Music to m<span style="font-size: small;">y <span style="font-size: small;">ears, and <span style="font-size: small;">heart.</span></span></span></span></span></span></span></span><br />
<span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><br />I am sorry this is such a long note. Guess I should have been keeping up with this as then <span style="font-size: small;">everything would be or<span style="font-size: small;">gan<span style="font-size: small;">ized neatly b<span style="font-size: small;">y date, and not one long diatri<span style="font-size: small;">be. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">I wonder how long it will take to get th<span style="font-size: small;">is <span style="font-size: small;">nasty thing out of my system. I am feeling like death today. I am <span style="font-size: small;">draggin<span style="font-size: small;">g my body <span style="font-size: small;">up and around to take my kids to ballet, art, <span style="font-size: small;">etc. There is no life beyond that<span style="font-size: small;"> <span style="font-size: small;">-- there hasn't been a<span style="font-size: small;"> life <span style="font-size: small;">for many many months. This take<span style="font-size: small;">s a giant toll on your emotional and spiritual life. <span style="font-size: small;">Emotionally, I cry at most anything<span style="font-size: small;"> -- I just don't have any more energy to continue -- and yet I must. There is no choice. Spiritually, I continue to <span style="font-size: small;">wonder w<span style="font-size: small;">hy God is silent to me. I wonder if I matter (and yet in theory we all know that we do). <span style="font-size: small;">To<span style="font-size: small;"> continue to walk in faith -- I'm struggl<span style="font-size: small;">ing with that. I think my faith has dried up<span style="font-size: small;"> (for m<span style="font-size: small;">e anyw<span style="font-size: small;">a<span style="font-size: small;">y<span style="font-size: small;">). I manage to pu<span style="font-size: small;">sh out a pray<span style="font-size: small;">er now and <span style="font-size: small;">then<span style="font-size: small;"> in <span style="font-size: small;"><span style="font-size: small;">desperation</span>, hop<span style="font-size: small;">ing upon hope that one day He <span style="font-size: small;">will actually do or say something to let me know that He does notice me .. and that there is a purpose t<span style="font-size: small;">o all this pain and suffering. It is SO difficult to teach your children "faith" when you feel like yours has been trampled. I continue to try. <span style="font-size: small;">Everything for me is one second at a time. I cannot look more beyond that.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">My children have been a light in this darkness. The<span style="font-size: small;">ir hugs have dropped little bits of life into this dead body. I love how they like to remember good things. <span style="font-size: small;">They often talk about<span style="font-size: small;"> Oma and Op<span style="font-size: small;">a (<span style="font-size: small;">my parents who <span style="font-size: small;">died over 6 years ago) and how they <span style="font-size: small;">can't wait to hug them in heave<span style="font-size: small;">n, they keep asking me what I would have named the baby we didn't get to hold, who would now be 2 years old as of last week. <span style="font-size: small;">They tell me all their favorit<span style="font-size: small;">e names. Julianna tells me how she wants a sister. </span></span> A very difficult one is how they daily say to me<span style="font-size: small;"> how they wish <span style="font-size: small;">mommy could run and play with them, and not be in bed all the time. <span style="font-size: small;">That makes me <span style="font-size: small;">tear e<span style="font-size: small;">very time. Ye<span style="font-size: small;">sterday, Ryan said to me<span style="font-size: small;">: "I guess you are now my 'stay in bed' mom" -- and I know he is sad. My heart breaks.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">I am<span style="font-size: small;"> too tired to pray for help, for rescue -- and I know others pray for me, when I cannot. I am grateful for that. Th<span style="font-size: small;">is road is long, and I often want it to end. I am thankful for family that keeps my eyes focused off of my pain but often I feel I <span style="font-size: small;">just can't take it anymore. I often wonder if someone else <span style="font-size: small;">(who is strong) was supposed to carry this load. I don't think I have what it takes to be a strong person. Maybe it looks different from the outside looking in. Oddly enough, through my pain, I now <span style="font-size: small;">notice so much more pain in the world. I know it just <span style="font-size: small;">didn't appear all of a sudden - I know my pai<span style="font-size: small;">n has opened my eyes to see other's sufferings I couldn't see before. I told <span style="font-size: small;">my hubby it makes me feel useless <span style="font-size: small;">th<span style="font-size: small;">at I can <span style="font-size: small;">do nothing to help others. 'What good am I to other<span style="font-size: small;">s when I am always in bed</span>? (other than to my kids)', I <span style="font-size: small;">asked. I want to help. I feel like I cannot. I continue to pray for a day that I can.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> <br />
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<i><span style="font-family: Verdana,sans-serif;"><u>UPDATE</u>:</span></i><br />
<i><span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">A few hours after posting</span> the above, my 8 year old son <span style="font-size: small;">came up to me a<span style="font-size: small;">nd said <span style="font-size: small;">it makes him really s<span style="font-size: small;">ad that I don't play with him anymore. He then just broke down and started crying and won't stop. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span>Oh how I need fo<span style="font-size: small;">r disease to stop hurtin<span style="font-size: small;">g my family.</span></span></span></i> Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com3tag:blogger.com,1999:blog-5169840753880557083.post-54211028069317470762012-07-15T15:26:00.001-07:002012-07-15T15:26:52.405-07:00Avonex - Dose 3<div style="text-align: justify;">
<span style="font-family: Verdana,sans-serif;">Last week's injection went okay without too much reaction. I was very achy about 10 hours later (instead of the 12 hours later last week). By Sunday I was almost back to normal. This week, however, was a different story. </span></div>
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<span style="font-family: Verdana,sans-serif;">I had my injection at around 9:30am on the 13th, and aches set in early afternoon, much sooner than previous injections.</span><span style="font-family: Verdana,sans-serif;"> Friday night I took Advil PM, but it did not help me sleep, nor did it help with the aches. I was feeling fairly nasty all Saturday. We had a family get-together Saturday night and I managed to pull it off, basically pushing myself to be "involved". Nausea set in late evening.</span></div>
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<span style="font-family: Verdana,sans-serif;">Again, I took Advil PM last night and hoped for a good sleep, however, even with taking Advil AND Tylenol, I was up most of the night in pain with nausea. This morning, it was just worse. This has been a new experience, as the symptoms seem to be continuing and worsening, rather than going away as before. This concerns me, especially since I'm still at half-dose.</span> <span style="font-family: Verdana,sans-serif;"> I can't imagine doing this for 6+ months, waiting for my body to accept the Avonex and stop nailing me with the flu-like symptoms. It makes me mad that I have to toss half of my upcoming year away to feeling sick, just on the hope that it might slow down the disease progression. I know my family isn't enjoying me laying around all the time.</span></div>Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com3tag:blogger.com,1999:blog-5169840753880557083.post-71423552751900763682012-07-01T15:13:00.002-07:002012-07-01T15:13:55.019-07:00Prayer<div style="text-align: justify;">
<span id="internal-source-marker_0.970616229443976" style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I
woke up not knowing whether I still felt super achy after my first Avonex injection or whether it was
just my normal self (I usually feel body aches much like a flu). Got
up and went to church and managed to focus through most of the sermon.
After the service was over, a couple came and prayed for me. </span><span id="internal-source-marker_0.970616229443976" style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">It was refreshing.</span></div>
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<span id="internal-source-marker_0.970616229443976" style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><span id="internal-source-marker_0.970616229443976" style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Disabilities are difficult.
When you first get diagnosed, many people surround you and support you,
but as the disability continues and/or worsens, many do not know what
to do or how to respond and often avoid you. A lot of times it's just that they feel uncomfortable, and it's easier to avoid you rather than to feel awkward in conversation. It’s been quite some time
since anyone has offered to come and pray for me. I struggle so much with faith, as I feel so defeated. </span><span id="internal-source-marker_0.970616229443976" style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">At this point it needs to be the faith of others to pray for what I can only remotely dream of. </span></div>
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<div style="text-align: justify;">
<span id="internal-source-marker_0.970616229443976" style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/JoAYb8YmCwQ" width="420"></iframe> </span><br />
<br />
<h2 class="padb10" style="font-family: Verdana,sans-serif;">
<span style="font-size: small;">Song Lyrics</span></h2>
<span style="font-size: small;"><em style="font-family: Verdana,sans-serif;">
This is not how it should be<br />This is not how it could be<br />This is how it is<br />And our God is in control<br /><br />This is not how it will be<br />When we finally will see<br />We'll see with our own eyes<br />He was always in control<br /><br />And we'll sing holy, holy, holy is our God<br />And we will finally really understand what it means<br />So we'll sing holy, holy, holy is our God<br />While we're waiting for that day<br /><br />This is not where we planned to be<br />When we started this journey<br />But this is where we are<br />And our God is in control<br /><br />Though this first taste is bitter<br />There will be sweetness forever<br />When we finally taste and see<br />That our God is in control<br /><br /><br />And we'll sing holy, holy, holy is our God<br />And we will finally really understand what it means<br />So we'll sing holy, holy, holy is our God<br />While we're waiting for that day<br /><br />We're waiting for that day<br />We'll keep on waiting for that day<br />And we will rise<br />Our God is in control<br /><br />(Holy, holy, holy) x2<br /><br />Our God is in control<br /><br />(Holy, holy, holy)<br /><br />Our God is in control<br /><br />(Holy, holy, holy)</em></span></div>Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com3tag:blogger.com,1999:blog-5169840753880557083.post-38127056606801821222012-06-30T23:00:00.000-07:002012-07-01T15:17:49.619-07:00Month of June daily journal<span id="internal-source-marker_0.970616229443976" style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June was a pretty bad month. I didn't post on this blog as I just didn't have the energy. Some have been asking how I faired the past month, so I thought I would upload my personal daily journal.</span><br />
<br />
<div style="text-align: center;">
<span id="internal-source-marker_0.970616229443976" style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">~~~ </span></div>
<br />
<span id="internal-source-marker_0.970616229443976" style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
1/12 - (see previous post)</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
2/12 - Woke up with hubby sick .. took him to hospital where he spent
the day. Diverticulitis for him as well as a pulled muscle in his back.
Hard day for me as I had to take care of kids while feeling sick. </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
3/12 - Another long day with hubby sick. Took major gravol tonight
because I needed sleep.. slept better, but still feeling very toxic and
disoriented.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
4/12 - Skipped German and drums today.. just felt too sick. Spend day
with rachel at my house - I just lay on the couch. Feeling horrible..
toxic, almost like I’m dying. It’s a horrible feeling and it’s just so
horrible to exist this way.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June 5/12 - Still feeling toxic. Super dizzy, lightheaded and nauseous. Had a hard time sleeping this night... </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June 6/12 - Feeling horrible.. laying in bed all day.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
7/12 - Exhausted today. Checkup with Dr. Louie on gums as they are
receeding terribly and hurting. He wants to do grafting again, but I
crashed so horribly last time.. I can’t see doing it again. Hubby went to
see a physiotherapist for his back and his leg numbness went away.
Went out for homegroup to Wired Monk. Had gluten-free choc cake and
coffee. Feeling ok, but tired.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
8/12 - Felt so nauseated all night. no sleep.. super sick. Probably
from the choc. torte and coffee last night? Stomach starting to really
bother me. Horrible.. doubled my stomach meds and starting taking DIVOL
plus for stomach pain. Figured out later I am not supposed to be
eating that type of stuff (coffee etc) due to it’s high acidic nature.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
9/12 - Feeling a bit better. Had a busy day, cleaning house, washing
floors and vacuuming (very draining). Got kids registered for Friday
Nite Bball and went out to Chilliwack for veggies</span>.<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
10/12 - Almost feel human. Was able to wake up at 8am. Haven’t been
able to do that in weeks. Made bacon and pancakes for family before
church. I didn’t go. Hands and feet burning less, although still doing
so. Fatigue less, but still there. Minimal bladder issues, if any.
Facial jaw pain minimal. Gums still hurting. Not feeling much
weakness in my right leg at the moment.. Good? Spent the day out at a family bday party .. did fairly well. Very tired but not feeling
toxic.</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
11/12 - Went in to see my neurologist which was very disheartening.
He wants me to do injections again. Felt like my life was over..
flashing before my eyes. The thought of that hell is just more than I
can handle today...</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
12/12 - Had nightmares all last night of trying to kill myself in
various ways. Obviously I’m more stressed about these injections than I
realize. I also had a dream where I was in front of the neuro for an
appt. and he said to me, Hmm .. your scans came back clear, and as you
have no symptoms, I would have to say you no longer have MS. The joy
and elation I felt at that moment was indescribable. Unfortunately at
that moment, I woke up.</span><span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Still reeling from the news of the shots. Whenever I think
about it .. I just feel panic. </span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June 13/12 - Took the day to stay at home and just relax. Do nothing. try to recoup.</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
14/12 - Woke up feeling exhausted and achy, feet and hands on fire,
like people are taking a hammer to my toes. Hard to do normal tasks.
Just want to be in bed, but even laying on my body hurts. Have MRI
today to see what further damage has happened.</span> <span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Had
friends over for dinner, went okay. Final night for Interchurch
baseball. Sunshine so that was great for the boys to have fun.</span><span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
16/12 - Couldn’t fall asleep and every time I did I
was awaken by hubby's snoring. Didn’t fall asleep until around 4am. So
exhausted.</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><br class="kix-line-break" />June
17/12 - Skipped church.. made breakfast for hubby for father’s day. He took them to church and I went back to bed.. took a gravol and slept off and on
until 3pm. I feel more human now rather than the horrible feeling of this morning. Leaving
tomorrow to visit friends .. so I need to get a good sleep tomorrow if I’m
going to be up by 6:30am to leave :(</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
18/12 - Not a great night .. kids were up a lot .. too excited about
going to see friends. Got up at 5:45am and left early to
get there for 9:30am. The trip takes 3 hours each way. I did okay
except once I arrived back tonight at 9:15pm , my feet and hands started
to go crazy … burning. So now i”m going to try to get to sleep with
this pain. Little J was near her wits end by 9:30 .. couldn’t stand
being in the car and was melting down. Brought a kitten home.. not sure
it was the best idea.. but we’ll see how it goes...</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June 20/12 - VERY bad hands and feet. Hurts to step on the ground. Tough since that’s how you walk and get places ;)</span> <span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Almost
through the process of getting financial aide for Avonex. Just waiting
for the final okay and then they will send in the order to Safeway and
have the nurse do the training with me. Fast process so far. Decided
it’s time to get back into full exercise after 2 years of being a blob.
Did some exercise bike today and some light weights for arms. It’s a
start. :)</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
22/12 - Didn’t do much yesterday.. just too tired. Today, pain in feet
and hands getting terrible. Have been taking gabapentin but not
helping. Got a headache today so took Aleve. Got 100% funding for
Avonex today. Safeway called and said I can pick up the drug anytime.
Will wait until nurse calls though, as I don’t need to get it earlier
than necessary. Need to get a fridge thermometer as the drug needs to
be between 2 and 8 Celsius. Tonight, I contemplated taking morphine, as
my feet are in so much pain I can hardly walk on them.. even the tops
of my feet now are just horrible.. I have no other way to describe the
burning pain. Almost like I”ve taken a sledgehammer to the tops of my
feet and I am left with the after-effect. The entire right side of my
body is now numb. Even my butt .. is so sensitive like my feet it hurts
to sit. What have I left? THere is no respite from this pain. How
can I live my entire life in this much pain? I decided to just cry,
and take 2 gravol.. hoping to knock me out so I can sleep. I am so
emotionally exhausted. I don’t like life.. I don’t want to be here
anymore. I have no choice. God does not rescue me. Somehow I must
continue to fight, but I don’t feel any fight within me. </span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">It’s a
battle.</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June 23/12 - woke up today with feet worse than yesterday.. OW!!!</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
24/12 - didn’t sleep much at all last night. Feeling so much pain in
my feet, and now it is also in my arms up to my elbows. Feel so
discouraged and defeated. Stayed in bed until 12:30pm .. had lunch and
got ready to go out with the extended family to bowling. Felt I should
make myself do it to get outside of my sorrow. It did help ..it was
lots of fun and helped me to be distracted from my pain. They all came
over and had pizza, again which was good, distracting from my pain.
Still don’t know how I’m going to gather enough faith to continue .. I
feel so defeated and weak it’s hard to even want to try.</span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
25/12 - Didn’t sleep much last night. Too much pain. Picked up the
Avonex today. The bill was $1,800.00 .. and that’s just for one month!
Thankfully, my bill was $0 … (as it is being covered each month).</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June 26/12 - Felt REALLY weird today, very disoriented. The only thing I can think of is I started on the new prescription for Gabapentin from Safeway, rather than my old one from another pharmacy. I called SAfeway and they said sometimes the formulation can vary a bit, and try to go down from 4 a day to 2 .. and see if that helps. It did.. The rest of the day I only took two 300mg's (one in AM and done in PM) and the dizziness was much less. </span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
29/12 - Nurse arrived at 1pm today for my first Avonex injection. It is only a 1/2 dose... I will have a shot a week for 4 weeks and then I will go to full dosing. My
sister Marilyn was here, as she was able to get instruction as to how
to do it for me. The first 4 weeks, as it's only a 1/2 dose, is only in a syringe. There is NO way that I can inject myself. I can barely watch the injection, let alone do it myself. After the 4 weeks, it will come in a injector pen, so I won't have to worry about that, I'll just have to get the courage up to press a button to inject. </span><span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I am a little nervous about side-effects after I go to full-dosing, but I will cross that bridge when I get there.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I’ll leave out the details of this first injection, but it went well. I was
waiting for the “flu-like” symptoms to kick in after a few hours, but it
wasn’t bad. I had taken an Aleve two hours before the injection and a
T3 just before, and then alternated Advil and Tylenol Extra Strength the
rest of the day and was only slightly flu-like. I went to bed hoping
that I had missed the worst. Unfortunately, I woke up at 1:30am fully
in flu-mode. I was achy from head to toe, and the rest of the night
was fitful with dreams of being sick. </span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<span style="background-color: transparent; color: black; font-family: Verdana; font-size: 13px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">June
30/12 - I spent the day on Tylenol and Advil, but making myself busy to
keep my mind off my body. I went out for breakfast with my
sister-in-law and spent the morning at Wired Monk relaxing. At times I
had difficulty concentrating, but managed to pull off being “out”.
Later in the afternoon, we had company over until the evening, which
was another good way of keeping me distracted. </span>Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-13728665499578310402012-06-01T19:55:00.000-07:002012-06-01T19:57:58.413-07:00IV Steroids<div style="font-family: Verdana,sans-serif;">
By May 25th, the pain my my feet and hands had increased to the point where I could not sleep at night anymore. I had contacted my neurologist and he was unable to set up the IV steroids as a course of treatment before the weekend. He suggested I go into emerg that day (Friday) to have them set it up directly at my local hospital. After a long 8-hour day waiting, it was then shift change at the hospital (7pm) and someone slipped up and didn't pass on the information to the next staff that I was waiting for a neurologist. Another hour later and the neuro left for the night, without seeing me. Once the staff realized their mistake, they called him on the phone and he refused to order the IV steroids, telling the staff to just send me home with morphine and to call my doctor on Monday. At that point I just broke down and cried. I had spend an entire day sitting in a chair waiting, no food, no water. I was exhausted. It was then 10pm. The resulting weekend was a blur. On morphine, I did sleep, yes, but it also kept me sleeping later than noon, and the rest of the day was a mental fog. Nasty drug! I managed to survive the weekend in that fog, not recalling much. Monday morning my neurologist's office profusely apologized for my misfortune, saying "that is not how it was supposed to happen" (referring to the hospital refusing treatment). So, they quickly were able to set up the infusions to start on the next day, Tuesday, May 29th at 2pm. One more day.. just one more day!!
Tuesday came and I was VERY glad it did. By this day, my feet hurt so much, that it was very painful to put any pressure on my feet. Walking was NOT a pleasant option. I had gone from 100mg of Gabapentin per day to 1200mg a day, and it still wasn't touching the pain.</div>
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<b><u>Infusion Day #1 - May 29/12</u></b></div>
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<a href="http://4.bp.blogspot.com/-fiYOqS4rMhA/T8l4Z4cG8OI/AAAAAAAAEHA/daOh6YRCq9U/s1600/IV-day1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-fiYOqS4rMhA/T8l4Z4cG8OI/AAAAAAAAEHA/daOh6YRCq9U/s320/IV-day1.jpg" width="320" /></a><u> </u></div>
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This infusion was different. Instead of a period of one hour to infuse, it was over two hours. Now while this means I'm sitting in that chair for over two hours, I soon realized it didn't burn in my arm, and over the week, seemed to keep other side-effects away. Normally, my arm wouldn't tolerate the IV for more than two days, but this time, I lasted the entire four-day bout without any arm irritation or redness! Two hours is the way to go!! My neurologist had prescribed Ativan to help with sleep, as the steroids can keep you awake at night, but no matter what I did, sleep did not come. I think I got only two hours of sleep this first night. I had major leg pain that set in in the evening which made it very difficult to sleep.<br />
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<u> </u></div>
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<b><u>Infusion Day #2 - May 30/12</u></b></div>
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Second day ... everything is going smoothly, just a little tired. Jordan decided to keep me company which was nice. I had also had an appointment with a head surgeon today regarding my
facial pain from months ago. He says it is NOT MS related, but rather
jaw deterioration. Stuc<span class="text_exposed_show">k a nasty camera
up my nose to see down my throat.. blech. With the clicking in my jaw,
it's most likely deterioration that may have to be dealt with surgically
down the road. He wants to see my MRI in July and also if it gets much
worse, he will schedule a CT of my jaw and sinus cavity to see if there
is possible infection which is causing the deterioration. Nice to know
it's not all in my "head" .. well.. it is, but you know what I mean :)
Bottom line: just because you have pain, it's not always chalked up to
.. "It's just your MS". </span></div>
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<span class="text_exposed_show">Stopped taking the gabapentin today .. I want to see how much I can handle and see if I am finding any improvement in pain. My body is WIRED, yet so tired. Thankfully, no leg pain tonight, and only feeling a little hot. Very thankful the weather outside was cool, otherwise my increased body temperature would have made any summer temp feel like a desert! Took another Ativan tonight to help me sleep, but unfortunately, I only had around four hours or so this night.</span></div>
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<b><u>Infusion Day #3 - May 31/12</u></b></div>
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Another rainy day, thankfully, because I was so warm it looked as though I was sporting a new sunburn! This IV treatment day was mostly uneventful with respect to difficult side-effects. I can deal with feeling warm. I find myself not thinking clearly. This bout of steroids is really messing with my brain. I find I have great loss of concentration and have difficulty focusing. I'm sure it's just all that is flowing through these veins.. or at least that is my hope! Tonight I thought I would try sleep without Ativan, as it certainly wasn't helping me sleep. Sadly, it was another loss-leader for sleep, not falling asleep until around 5am, when I took an Ativan. I think I'll try a gravol for tonight.</div>
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<b><u>Infusion Day #4 - June 1/12</u></b></div>
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My beat-up arm is happy to be free of the IV. Now if I can only get some sleep tonight! It is actually much more bruised than looks in the picture. Apparently I'm a good "bleeder". hehehe<u><b></b></u></div>
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I feel so very disoriented. I can't follow conversations well.. More than two concepts are introduced into one sentence and I'm lost. Freaky feeling. I am attributing it to having not slept for days and this solumedrol pouring through my being. Dizziness is a common side-effect, but I'm sure Kirk will argue that is part of who I am anyway. I am going to try to forego the Ativan today and try plain ole' Gravol, and see if that does the trick.</div>
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Thanks all for your prayers and offers of help during this time.</div>
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My father-in-law emailed me a devotional today, which I found very fitting to where our lives seem to reside lately, so I felt I should post it below. </div>
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<blockquote class="tr_bq">
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<a href="http://feedproxy.google.com/%7Er/DailyDevo/%7E3/hiLWNxXkr1A/gods-complete-control.html?utm_source=feedburner&utm_medium=email" name="137a8ad45c726b1e_1" style="font-family: Arial,Helvetica,sans-serif; font-size: 18px;" target="_blank">God's Complete Control</a>
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Posted: 31 May 2012 10:05 PM PDT</div>
by Charles R. Swindoll<br />
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<i>God is our refuge and strength,</i><br />
<i>A very present help in trouble. </i><br />
<i>Therefore we will not fear, though the earth should change</i><br />
<i>And though the mountains slip into the heart of the sea; </i><br />
<i>Though its waters roar and foam,</i><br />
<i>Though the mountains quake at its swelling pride. Selah. . . .</i><br />
<i>The L<span style="font-size: 8pt;">ORD</span> of hosts is with us; </i><br />
<i>The God of Jacob is our stronghold. Selah. . . .</i><br />
<i>"Cease striving and know that I am God."</i><br />
—Psalm 46:1–3, 7, 10</div>
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Quiet our hearts, dear Father, and in so doing, remind us that You are sovereign—not <i>almost </i>sovereign but <i>altogether </i>sovereign.
Nothing occurs in our lives that has not been masterfully planned and
put together by You, our eternal God. Help us to enter into the truth
of Psalm 46:10 personally and consistently. May that result in being
still, enabling us to discover that You are God. As we cast our cares
upon You, knowing You care for us, release our stress.</div>
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We entrust our concerns to You today . . .
large and small, new and nagging. We long to experience peace-filled
living by stepping off this treadmill called pressurized living. We pray
that Your mighty presence would take the place of the stress, the
demands, the struggles, the mess we've created. We ask that You would
give us Your <i>shalom—</i>Your peace—like we've never known it before. We deliberately choose to trust You and to rest in You.</div>
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In the name of Jesus. Amen.<br />
<br />
See also Psalm 34:4; Proverbs 16:3; Jeremiah 17:7; Philippians 4:19.</div>
<br />
<br />
<span style="font-size: 8pt;">Excerpted from<i> </i><a href="https://secure2.convio.net/ifl/site/Ecommerce/834144060?VIEW_PRODUCT=true&product_id=35762&store_id=1101" target="_blank"><i>The Prayers of Charles R. Swindoll, Volume 2</i></a><i>,</i> Copyright © 2012 by Charles R. Swindoll, Inc. All rights reserved worldwide.</span></blockquote>Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com1tag:blogger.com,1999:blog-5169840753880557083.post-81948716749476700462012-05-23T10:36:00.001-07:002012-05-23T10:39:47.732-07:00Spiraling downwardThe last two weeks, I was starting to feel a little better. I was still feeling terrible, but "better" in that I didn't need to be laying around but was still tired and weak. My jaw actually had started to feel better and it wasn't aching anymore. There was still some numbness but it had gotten much better.
<BR><BR>
My little Julianna had her 5th birthday on May 17th. That was a very busy weekend. A few days later, I realized I was crashing again. My numbness in my face picked up and the discomfort in my face increased to being the entire left side of my face. I couldn't sleep well because of the pain (for lack of a better word .. it's not really painful, but severely achy). The weakness in my right leg has increased, and with each day I seem to be getting weaker.
<BR><BR>
This year has been a rough year. Each day seems to bring more struggles. My spirit is broken. I can't seem to accomplish the most normal things. My life has regressed to taking care of my kids (schooling etc.), not cleaning the house (no energy) and not seeing friends.. I just don't have the energy to go out.
<BR><BR>
It's hard fighting guilt, because my illness brings such stress to our family. I just so long to feel nothing .. no pain. I long to play with my kids, to have the emotional strength for another day. Sometimes pain is loud. It clouds all you do. You try to focus on the beautiful flower outside, but the shooting pain in your leg screams for attention. Wearing shoes proves to be difficult, because it just feels like an alligator is trying to cut off the circulation to your foot. My body is so sensitive even wearing clothes is uncomfortable. You sometimes search for the END button, but realize it's not there.
<BR><BR>
I posted a picture on Facebook recently, which is exactly how I seem to feel. When I try to make sense of my world, it feels like it's all messed up. This is a great visual of what seems to go on in my head when I try to figure out where to go from here. It's all just chaos.
<BR><BR>
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<a href="http://3.bp.blogspot.com/-y_h7fb8QVtc/T70eDKfPD0I/AAAAAAAAEG0/xAVM3H16pCc/s1600/head_pain_1.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="273" width="400" src="http://3.bp.blogspot.com/-y_h7fb8QVtc/T70eDKfPD0I/AAAAAAAAEG0/xAVM3H16pCc/s400/head_pain_1.jpg" /></a></div>Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com1tag:blogger.com,1999:blog-5169840753880557083.post-12413186464898332022012-05-04T21:29:00.001-07:002012-05-04T21:53:24.244-07:00Stuck on pauseOn March 27, 2012 I woke up in the middle of the night by throbbing aches in my left jaw. This was the start of a period of ill feelings. This numbness and achiness in my jaw continued and increased slowly over time. To this day, I still do not know what is causing it. It could be the MS, but one can't always blame every malady on MS.
Several weeks ago (April 19), I was at home with a few people over and I felt that horrible feeling in my body -- the one where you can feel the rapid onset of the decline of your physical state. I did not sleep much that night and since then, I've been struggling with my daily life. My energy level has been minimal. My ability to cope with lots of people around has been minimized -- by evening, all I can do is just sit around and vegetate. I do venture out, but it requires such energy and concentration to engage the world, that it wipes me out even more the next day. My entire body (skin) feels numb (rather than just my arm or leg), it hurts to touch my scalp, my head/migraine pressure seems to have decided to stop renting and move in full-time, and overall the rest of me just aches and continually sucks any energy remaining. I tried Gabapentin for a few days, but I noticed my restless legs in the evening going CRAZY .. so on the chance that is what was setting it off, decided to stop.
I went to a camera class last night. Being in the evening, I was already exhausted and I found concentrating very difficult. At one point, all the people in the room were talking in small group conversations, filling the room with too many distracting voices. Oh how I wished at that point for the tall wooden wardrobe to be beside me -- where I could quietly get out of my chair, sneak into that wardrobe and into a quiet and peaceful (and snowy!) Narnia. Unfortunately, this is the world I am in ... and try as I might, I cannot change it -- cannot escape it, nor can I use strong will or determination to push it aside.
I left that meeting completely worn out -- tired. There are times when you have the emotional determination of Job, suffering through life yet pushing through and seeing the blessings around you. Every once in awhile, it seems as though all the bullets that come your way make so many holes that your vessel will no longer hold any more strength or resolve.
I found myself waking this morning, wishing I were 90 years old.. at least then I'd be close to the end. The days are long, but when you can at least feel semi-normal, you can manage it. When your body is working so hard to tear you down, and you feel like an alien with skin, it's just so hard to muster up any will to keep fighting. I just want it all to stop. I just want to cry and keep crying. But I can't. Responsibility.
It's not the problems we face that define us, but how we choose to handle them. I feel like at times when I'm weakest, I do not cope well. How does one get to the point when you can hold strength to keep going at low points? How can I choose to handle this "problem" in a way that will be an encouragement to others? Nagging thoughts in my head also tell me, "what if it stays like this for the rest of your life?". I just can't even imagine how horrible...
At this point I'm living one minute at a time, cancelling engagements and watching life from within the fish tank -- trying to remain as positive as I can. It is a war within.Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com2tag:blogger.com,1999:blog-5169840753880557083.post-66502672959700688292012-03-08T16:29:00.000-08:002012-03-08T16:29:26.486-08:00Foot DropWhere did you come from? A few days ago, I started to feel the weakness come back in my right leg. A weakness that when you walk, it feels like it's a struggle to bring your right foot up high enough to complete your gait. Over the past few days, it has been increasing, with a heightened weak feeling all the way up to my knee. Drat. Was really hoping to have that not come back. Praying that it does go away again, but as we all know, this is a road we cannot pave ourselves, we cannot control the disease, it presents its surprises when it wants. The best I can do is to try to take the best care of myself that I can, and pray that God gives me grace to walk through it. <br />
<br />
Found this on another blog, which hopefully will provide some help:<br />
<br />
<blockquote>The “Foot drop” fight is so un-evenly matched….that it doesn’t take long to see who is the victor and “The Evil: “Foot drop” is now a permanent resident that you never invited to your now……..disabled mobility.<br />
<br />
Your only hope is to keep that dominant “Soleus” muscle stretched……Always!!!!! <br />
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<br />
Trying to bring the angle from shin to big toe to less than 90 deg.</blockquote>Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com1tag:blogger.com,1999:blog-5169840753880557083.post-36518395246414783752011-12-25T19:35:00.000-08:002011-12-25T19:35:46.870-08:00I missed Christmas<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-3mKbuHsqH6U/TvfrLfrNCTI/AAAAAAAAC5Q/o1RN-W8whKQ/s1600/today.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="392" src="http://4.bp.blogspot.com/-3mKbuHsqH6U/TvfrLfrNCTI/AAAAAAAAC5Q/o1RN-W8whKQ/s400/today.jpg" /></a></div><br />
<br />
I have felt pretty horrible the past few days. Mix that with a 7 year old that develops a stomach bug for two days .. and not making it to the bathroom in time, and you have lots of fun cleanup with a pounding head. I just can't seem to shake this tension headache, and it causes such pain in my neck/head and achiness and nausea, that my Christmas has pretty much been a write-off. All the traditions I normally did with my kids went out the window. How depressing.<br />
<br />
I sent the fam to the Christmas family get together today on their own. It's been a quiet day, other than the ringing in my head. My first Christmas alone.<br />
<br />
Hoping the rest of the holiday will improve and I will be able to enjoy some time with my family. I was hoping to at least get over to Starbucks for our Christmas morning coffee & hot chocolates, but didn't manage that either.Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com4tag:blogger.com,1999:blog-5169840753880557083.post-15652387074508003762011-12-21T11:10:00.000-08:002011-12-21T11:10:39.213-08:00No Christmas Cookie DecoratingA year hasn't gone by in the past 20 years when we have skipped making Christmas cookies together. Years ago, it was my mom making cookies with me and Jordan, then it was transferred to me, every December, baking and decorating cookies together. Always a huge mess, but a big memory. This year, I can't see how I can pull it off. I just don't have the energy. It's really sad, as I had so much time this December to get it done, but it seems my body just doesn't want to let me. <br />
<br />
Perhaps it was just the tension and stress of having all the kids in casts or the hospital .. maybe this is finally my body saying "enough" and giving up.<br />
<br />
It started on Sunday night, when I was just laying down on the couch watching a movie with Jordan, I felt my body start to drain. I went to bed early at 9:30pm, knowing I'd be in for a long night. I didn't sleep the entire night, my body feeling very foreign and much like my insides were a giant balloon being blown up so much that I was going to explode.<br />
<br />
The next day, Saturday, was pretty much a write-off with huge pressure at the back of my head. I continued on as much as I could, but by Tuesday afternoon, it was so intense that I decided to go to a walk-in clinic. Unfortunately, the wait there was almost three hours long, so I decided to go to Emerg at 4pm. The wait there was fairly substantial as well, but by 6:30pm, I had seen the doc and he ordered a series of x-rays and a ct of my head to rule out anything sinister. Thankfully, they saw nothing on the scans, and he really didn't know what to suggest, other than perhaps a tension headache gone crazy. They gave me two T3s and 600 of Ibuprofen for the pain, which took it down about 50%. I finally got home just before 10pm and had a fairly decent sleep considering. I didn't take any more pain meds until 10:30am .. so I am hoping I didn't wait too long, as it's starting to feel a bit crazy again. <br />
<br />
I'm sad that this Christmas seems to be a write-off for the things I wanted to do to create memories, but I guess I'll just have to resolve to make "New Years" cookies this year :)<br />
<br />
Last Year's Gingerbread Man Decorating:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-3rZO1R9w9m0/TvIvGa6ARqI/AAAAAAAAC44/Ni8zWFSdRag/s1600/102_4418.JPG" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="267" width="400" src="http://2.bp.blogspot.com/-3rZO1R9w9m0/TvIvGa6ARqI/AAAAAAAAC44/Ni8zWFSdRag/s400/102_4418.JPG" /></a></div>Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com1tag:blogger.com,1999:blog-5169840753880557083.post-14167700989323275262011-12-14T11:01:00.000-08:002011-12-14T11:01:06.040-08:00Slow MotionMy body is definitely in a downward spiral. Yesterday I could feel myself sinking, and by evening, it was getting worse. I spent the night in a fitful sleep, feeling the pain within my body and it keeping me from getting into that deep sleep which is so essential. My left arm has been plagued for a month with intense nerve pain, like a sharp twinge up and down the skin that makes it feel itching from hell -- but no amount of scratching even touches it. I woke up realizing today would be another challenge to fulfill my daily tasks.<br />
<br />
I'm in that spot of "do I cry .. or do I go into <i>robot</i> mode and just keep going?". All of this reminds me of when my mom would lay in bed for days. I would be so frustrated that she was not able to contribute to life.. frustrated that I had lost my mom to that unseen attacker that would keep her from me for days. And here I am -- repeating history for my children, only I'm doing it 20 years earlier than my mom was. I am angry, I am frustrated, I am so sad that I feel like I'm stuck in this prison. I so want to enjoy getting ready for Christmas. I want to bake cookies and bring them to my neighbors. Yet here I sit in my bed, unable to muster up enough energy and strength to even feed my kids breakfast (thank goodness for cereal on days like these). <br />
<br />
I hear of stories of people with immense strength, courage to keep plugging forward and seem to rise to the occasion .. it makes me wonder if I've been given all this by mistake. I don't have what it takes to be strong amidst all of this. It's such a drain on my family. <br />
<br />
I see my neurologist tomorrow to just give him an update on all that is happening with me. Pretty sure he can't do anything about it, but it's something to note in my chart.Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com3tag:blogger.com,1999:blog-5169840753880557083.post-58194257587570041732011-12-12T23:24:00.000-08:002011-12-13T23:25:30.010-08:00End of School TermSchool reporting today which went well. I had some apologies for all the work we did NOT do because of me being in the hospital with Jordan for so many weeks. <br />
<br />
I have a realllly itchy left arm.. driving me crazy. Feeling very very tired. I think I'm fighting a complete crash.. I don't know if I can keep it away....Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-4240501222351784642011-12-09T23:21:00.000-08:002011-12-13T23:23:16.783-08:00UBCDrove in to UBC for dental appointments for the little kids. Julianna of course, freaked out and wouldn't let them actually check her, Ryan has more cavities and Daniel needs another crown.. oh joy.Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-70740722945304607052011-12-06T23:19:00.000-08:002011-12-13T23:21:42.328-08:00Britannia MinesJordan was stubborn enough to want to still go to our scheduled Britannia Mine excursion we had planned back in the summer. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-5wfl2EAx1aM/TuhOdUxz5zI/AAAAAAAAC3c/LoLIqGQ4x5w/s1600/minetrip.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://3.bp.blogspot.com/-5wfl2EAx1aM/TuhOdUxz5zI/AAAAAAAAC3c/LoLIqGQ4x5w/s320/minetrip.jpg" /></a></div><br />
He did remarkably well walking around the mine but tired out after about 2 hours. Not bad! Stayed in Squamish overnight at a hotel (Groupon purchase) and that was nice to relax after our long day of travel and walking. Made a nice steak dinner for the fam .. hoping to put some fat back on Jordan!! The little kids got to swim in the pool and Jordan spent more time in the room catching up on his studies.Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-27152648941240789832011-12-04T23:17:00.000-08:002011-12-13T23:19:12.970-08:00Home - day 5Jordan is doing better as he has rested for a few days now. Seems to have “turned the corner” and dropped his low-grade fever and is on the mend. So happy about that! Still moving slowly and carefully. Great that he could have this weekend to just lay low and mend. <br />
<br />
Jordan is having his job interview today and going to his last Stats class to help clear up some of the missing pieces from his time in the hospital. Finally got our Christmas cards and pix sent out in the mail today, even though they’ve been sitting around since mid-November. So much for being organized and prepared!<br />
<br />
Went to the the city’s Christmas tree lighting celebration .. Jordan stayed home as there is no way he’d be able to walk around that much. It was fun for the kids!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-DGcqsVICgyw/TuhN6EXxq9I/AAAAAAAAC3Q/zn_NfAQpMcI/s1600/abbytree.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="240" src="http://4.bp.blogspot.com/-DGcqsVICgyw/TuhN6EXxq9I/AAAAAAAAC3Q/zn_NfAQpMcI/s320/abbytree.jpg" /></a></div>Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-40854229973480950992011-12-02T23:16:00.000-08:002011-12-13T23:17:04.912-08:00Home - day 4We did a few comprises .. he postponed his job interview for Monday (the 9:30am meeting) and skipped the class in the middle, so he’s taking one class this morning, back home for a rest and then back for 2:30-4pm - much better! (yet he’s still fairly wiped).Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-37223245889417762002011-12-01T23:15:00.000-08:002011-12-13T23:16:22.629-08:00Home - day 3Still has fever.. am keeping the house cool. Tells me he is going to go to attend his last day of classes tomorrow. He is NOT well enough to do that .. (9:30am until 4pm) with no break between the classes. Not a smart move as he is still fairly weak.Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-66206159681825652802011-11-30T23:14:00.000-08:002011-12-13T23:15:40.174-08:00Home - day 2Still continues to have a fever (under 38). I have been setting my alarm clock to get up at 2am to give him Tylenol to keep it down. <br />
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He went to his Calculus class today as it was a review for the final exam. He looks like an 80 year old walking skeleton shuffling into the school (he’s lost a lot of weight). Really pushing himself as he does best...Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-59039382260255873202011-11-29T23:11:00.000-08:002011-12-13T23:14:40.862-08:00He's home!Dr. Bond doesn’t think he needs another x-ray, so discharged Jordan early in the morning. I wasn't able to get in that quickly so he just watched some movies until I could get in with the kids.<br />
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12:30pm .. Jordan is now home and is really weak and in pain.<br />
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9:53pm .. noticed that Jordan has developed a fever (38.8)<br />
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Dr. Bond has him on a 21 day course of antibiotics.Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-39679204768542645832011-11-28T23:10:00.000-08:002011-12-13T23:11:02.205-08:00Home?1:29pm Jordan is still in substantial pain, most likely due to the chest tube. The doc wants to do an x-ray today, another x-ray in the morning and if things look good, take the chest tube out tomorrow and then maybe home tomorrow afternoon (Tuesday). I am home with the kids today as Kirk needs to be at work.<br />
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6:14pm So Dr. Bond wants to take Jordan’s chest tube out now to see how he would go without it. More x-rays tonight at 9pm and again tomorrow morning. If all goes well he will go home tomorrow morning. (I recall saying that before …)Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-88195365178761367782011-11-27T23:08:00.000-08:002011-12-13T23:10:10.700-08:00Not a good day.Didn’t sleep too well.. I am not feeling good today. Taking a bit of time to get myself out of bed and to the hospital .. heading out to the hospital now - 9:30am.<br />
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Jordan had a night full of pain and didn’t sleep well. I would have thought he would sleep well with being put under for surgery.. I guess his “grogginess” wore off. I didn't stay long. I left him to just rest and let him take a break from thinking about doing any schoolwork.Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0tag:blogger.com,1999:blog-5169840753880557083.post-32151195411182900422011-11-26T23:02:00.000-08:002011-12-13T23:08:38.930-08:00Surgery Day - Take 28:30am So apparently Jordan had a bad night as when he was trying to get up for the washroom in the middle of the night he accidentally yanked on his chest tube, so was in pain all night. Of course in true Jordan fashion, he found a way to blame his mother for that (even though I wasn’t even there). Tube output was minimal overnight so I assume they will be taking it out today.<br />
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11am Dr. Bond came in and said that the x-rays still show that there is fluid in the lungs, so they will leave the tube in awhile to drain more. Jordan is off the subq dilaudid so he is not enjoying having a bit more pain. They are doing oral meds only now to try to wean him off to go home. Made him catch up on some UFV classes and now he’s having a nap (his new favorite thing). Doc says surgery is not off the table, it’s still a wait and see game.<br />
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11:31am Dr. Bond came in again and said he doesn’t like something in the X-ray (looks like there is something building up in the lining of his lung) so they are putting him on Level 1 for surgery and hopefully be in there within the next few hours. Jordan is upset as this makes him even further behind in his classes. They are hoping to operate by 4:30pm. <br />
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1:14pm Dr. Altaf came in and had me sign some paperwork for surgery, including on signing off on a possible thoractomy. I do NOT want Jordan to go through that hell. <br />
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4:38pm he is being prepped for surgery. <br />
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Dr. Bond is going to do it and says it will be quick and short (10-15 min) and that he won’t do a thoracotomy .. Dr. Bond is great! They wheeled him in just before 5pm and I quickly went out to White Spot for a burger and fries for take-out (yes, it made me feel horrible later). Just as I walked back into the hospital to the surgical waiting area, Dr. Bond walked out and told me that it was the original surgery spot that had somewhat opened and was intermittently leaking. Any type of extended movement was just causing it to tear and leak more. Now on to the next leg of recovery .. again.<br />
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7:09pm - the nurses let me go in to post-op to wait with him.. <br />
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His blood pressure is good and he is doing well (although totally groggy). Will wait until they take him upstairs and then once he is settled head off to home again and try to get a good sleep before coming in the morning. Amy (former neighbor) came to help out with the kids in the afternoon so Kirk could come in to see Jordan before the surgery. Kirk headed back home by 8pm and I got home very late.Anonymoushttp://www.blogger.com/profile/08360034511142448138noreply@blogger.com0