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Showing posts with the label EDS

Making it Work: Are You a Fall Risk?

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Sometimes life isn't ideal. Let's face it, most of the time it isn't! So, we do what we need to, to make things work. In my "Making It Work" posts, I share life hacks and ideas that have helped me so that, maybe, they can help someone else too. I hope you enjoy!    So, I've officially entered my Fall Risk Era. Yeah, I didn't think I'd hit this for a few more decades either, but God had other plans! As I approached  Radiation Therapy this spring, my vertigo really kicked in. I found the world around me tilting and whirling like I was on a ride at the fair (not Disneyland, Disney wouldn't do this to me!). My husband noticed that I was leaning to the right again (this happened before my brain surgeries as well) and that my path did not proceed on as straight a line as I intended. One Sunday at church, things got really bad! Our sanctuary is very dimly lit during services and the way everyone lines up to receive communion has lines of people going in ...

A Ministry of T-Shirts

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   The coolest things in my life have often started with a little idea and rolled from there. Back when I was first diagnosed with a brain tumor and had to undergo multiple surgeries, my sister-in-law sent me a couple of shirts in the mail. It was a sweet and thoughtful thing to do, and I bet she had no idea what it would lead to!   I wore the shirts she gave me to appointments with the intention of keeping life a little lighter. I knew it would brighten my spirit and hoped it would give the nurse, technicians and doctors I interact with a smile as well. And it did! I bought a few more shirts along the way. Sometimes they had to do with brain tumors, sometimes EDS (Ehlers-Danlos Syndromes), sometimes they just expressed how I was feeling.  It got to the point that when we hit a roadblock or a new challenge in my health journey, my husband would say, "It's time for a new shirt!" I had collected shirts about MRIs, shirts about brain tumors, shirts about EDS, shir...

Trusting God in the Midst of Suffering: Waiting Patiently and Confidently

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  We were given this hope when we were saved. (If we already have something, we don’t need to hope for it. But if we look forward to something we don’t yet have, we must wait patiently and confidently.)   Romans 8:24-25 NLT  Hope. We delved into it yesterday, but today it becomes more real, more palpable. Let’s dig in! Today’s verse says that we were given “this” hope when we were saved. What hope is that? Well, it came in the previous verse: And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us.   Romans 8:23   When we were saved, God gave us the future hope of realizing our full rights as His adopted children, including our heavenly bodies. These bodies will not know pain or suffering, decay...

Preparing for Radiation: There's Always a Catch

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Over the next few weeks, I'll be sharing regular posts about how I'm preparing for radiation. I'm hoping these can help someone else, as I struggled to find a conversational source like this that dealt with the subject. For more information on my brain tumor, check out these posts .  I don't know why, but with me, there's always a catch. Before my brain surgery, I ended up with a horrifically painful sinus infection that blew out the back wall of my sinus, leaving tiny pieces of bone floating in my head, and preventing me from getting the surgery that was critical to my survival. Turns out, it's not a good idea to perform brain surgery on someone with an active head infection 😬. That delayed my brain surgery for a full month, and it weighed heavily on my mind as I approached radiation therapy and, yet another, bizarre, unexplained complication arose.  I've struggled with scalp issues for months, I don't know why. Perhaps it came from reverting to comme...

Holding It All Together

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  God spoke to my heart recently at church and the message has stayed with me so strongly that I really wanted to share it with you today. I'll wait to post it though so that I can link the sermon, although the song will take longer to be recorded. You see, our worship pastor, Michael, is also a song writer and God has used him to share some beautiful, impactful messages through music. A few weeks back, he shared a new song he had written and it touched my heart. This week, he shared the song again and invited us to sing along, but it spoke to me even more deeply because of the message a guest speaker had given. One of our fellow church members, Bryan, spoke yesterday on John 5:2-9 , the story of Jesus healing the man at the pool of Bethesda. He focused on Jesus' words in verse 6, “Do you want to get well?” This may have seemed like a strange question, but there are lots of reasons that someone may not want to get well. Illness may be all they've ever known. This man may ha...

Praying God's Wisdom: Already, but Not Yet

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  Wait for the Lord; be strong and take heart and wait for the Lord. Psalm 27:14  Have you ever found yourself in the Waiting Place? I wrote about this last April with regard to waiting for Jesus to return and take us home to be with Him. This week it’s taken on a different connotation for me. Two weeks ago, I heard a speaker share about when Jesus asked the man at the well, “Do you want to be healed?” (post coming soon, once the song it discusses is released 😉 ). This last Sunday, God followed it up by a teaching, at a completely different church, on healing, specifically discussing the story of the man born blind and his healing we read about in John 9 . All this stirred up in me the old questions I have about healing. Things I thought I had resolved and found peace with are churning once more in my heart and mind. I *think* this is God’s doing, that He wants me to revisit these things and explore them with Him in light of a new season of my life. It’s uncomfortable. I d...

Thanks for Your Help, Friends!

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 Last year about this time, I wrote to you all asking for a little help from my friends , and you showed up! We raised $357.68 in donations over the month and I wanted to share with you today how that has influenced my blog this year.  First, it showed me that there were real people out there reading what I was writing who actually valued it enough to contribute financially. That means more than I can possibly express! I love  writing, but it's hard when you put things out into the blogosphere day after day and you wonder if anyone sees it, if anyone cares, if it's making a difference. When you all showed up for me last December, it encouraged me to keep writing, to keep traveling, to keep learning and sharing things with you. THANK YOU!!!  Next, by having some level of financial income, my blog was legitimized as a business. This enabled me to open five different credit cards and two bank accounts earning me 365,000 points/miles and $1,200 in account signup bonuses....

A Day in the Life of a Salty Zebra

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7:29am - Wake up and attempt to claw my way to consciousness, but failed 8:26am - 0.0/20 points Wake up and take my stability score. I check this each morning and it lets me know where my body is at and how I should pace my day. A 4/5 is pretty good! It is supposed to mean that I have been pacing well lately, and I have been. 8:35 - Actually get out of bed, Use the bathroom and brush my teeth. I used to brush my teeth after  breakfast in the morning, but since I've been wearing a retainer at night (the last seven years or so) I need to brush that and my teeth before I eat. 8:48 - 0.6/20 Fix coffee and breakfast then do my Bible study while I eat, or at least start it... 9:40 - 1.2/20 - Actually starting Bible study after being distracted 10:18 - 1.6/20 - Restarting my Bible study after being distracted (it's really hard to get things done with my husband around sometimes). Switched to the couch where I can sit with my back supported better now that I've finished eating. 11:...

Finding Pain Relief Options

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I am an Amazon Associate and when you purchase something through the links in this post I will receive a small bonus. This does not change your price at all, it just helps support what I'm doing on the Salty Zebra Blog  For a long time my pain-relief options have been quite limited. For the most part I stick to over-the-counter options like Tylenol, Ibuprofen and Excedrin, but they have helped less and less over the years. Now I often feel like I'm taking them just so I've tried something . But over the last year, I've added an additional tool to my toolbox and I wanted to share it with you in case it could offer you some relief as well! The first time I heard about this was after my husband sustained a terrible broom hockey injury. He was playing with the kids' youth group and was so focused on moving the puck with his broom at high speeds that he didn't notice the wall directly in front of him. This caused the end of the broom to hit him right in the sternum. ...