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Showing posts with the label Ehlers-Danlos Syndromes

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. ...

For Such a Time as This

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   As a young wife and mom, I struggled. I was also young in my faith, having only started walking with Jesus a few months after my first son was born. Everything was hard. I had four kids under 6, one of them newly brought into our home from a war-torn country with all the trauma that goes along with it. The other 3 were no cake walk either with serious food allergies that had to be catered to, making it so that I had to make nearly everything we ate from scratch. I was also in the early years of my marriage, and we were simultaneously learning how to be good Christians and good spouses, and had mastered neither. I heard the story of Esther, and I wondered, could God have brought me here for such a times as this?   Fast forward several years and I’m two years into braces, not a fun journey, and facing complete reconstructive jaw surgery. Months of recovery while trying to balance caring for and homeschooling four kids. My husband was travelling regularly, being gone...

Feeling the Futility

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 This morning I'm feeling the futility. I try so hard, so hard , to do the right things. I'm trying to be a good steward of the body God has given me and the resources He's provided. I'm trying to listen to all the medical professionals whose advice I've been blessed with. I'm trying to eat right and exercise right and sleep right and wear the right things and do the right things and not do the wrong things.  And still, things seem to be heading downhill. Sometimes I feel like Jack's partner tumbling head over heels down the slope.  It's become a frequent, more-than-daily occurrence. My husband says, "You're falling apart!" followed by something between a chuckle and a guffaw. I am blessed and thankful to report that my husband's empathy and nurturing have increased by leaps and bounds. As a side effect of this, he is noticing more when things are not right with me. He sees when I get a certain look on my face, or it grabs his attention...

The Fellowship of Suffering

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   I am well and truly blessed in this life. I have an amazing husband, wonderful children who love me, and a supportive family. I have a comfortable home, with two of the cutest dogs alive. We have nice cars that get us where we need to go, and we don't have to worry about them breaking down. We are adequately provided for, with extras that allow me to travel and see the world. I have so much more than so many in this world, and it makes me feel uncomfortable with expressing that I also have suffering in my life. But that is the absolute truth, and I think it's important to share it for many reasons.  Back in 2017 when I first began receiving my diagnoses, one of the first things I did was to learn about them. I signed up for webinars. I read books. And I joined Facebook groups. While I learned a lot from the webinars and books, I think what I really needed in this process was the Facebook groups. You see, I needed to get outside of the technical information and see what...