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Showing posts with the label Ehlers-Danlos Syndromes

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...

Living Six Months At A Time

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  I go six months in between MRIs to check on my brain tumor at this point. You might think that gives me a six month break in the worry, but it doesn't. My husband and I were discussing this in the car today, on the way home from a doctor's appointment of course, and what we decided is that it gives us about two months of, "Boy I'm glad that scan was clear." Followed by two months of, "Well, I'd better not book anything six months out because I don't know what the next scan will show." And finally two months of, "I wonder what the next scan will show? Are my symptoms worse? What will we do if it's worse? What if they say they just can't tell still?"   Living like that is exhausting! Both of us are so over it, but not sure how not to live it. It's not like we're actually caught up in worry. We've really handed things over to God and we trust Him for it, but the wondering has us in pretzels. Do you know what it's ...

Get a Move On!

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  As I mentioned briefly last Wednesday , exercise is an important part of maintaining my blood sugar. According to my doctor and my nutritionist, I need to get some movement in after each time I eat. That's not super easy or practical because I'm a small-meal-every-two-hours person. That would mean I'm taking 7 or 8 walks a day! I wasn't even taking one walk most days before so that's quite a leap! But something is better than nothing, so what can  I do? Walking the Breast Cancer 3-Day in 2007. 60 miles in 3 days!  On our trip over the last week I did try to get out and do a 10-15 minute walk around the resort each time I ate, or I would get out of my wheelchair and push it around town like a walker. I always feel awkward about doing this no matter how long I've been using the chair. It's like I still feel like I have to prove my disability to everyone around me and if I get out of my chair they'll think I'm faking. Well, the truth is they might, bu...

Is Las Vegas Wheelchair Friendly?

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 As unbelievable as it is, it turns out that not everyone loves cruising as much as I do! My husband is one of those "not everyone"s. He's a great sport and more than willing to come along with me on my adventures, but it's not really his thing. What does he like to do? Head to a city and just go out exploring. I so appreciate him joining me on cruises lately and I wanted to meet him where he's at. So I set about finding a city we could get to that I could get around in my wheelchair well. This matters a lot because I can't get more than a few blocks without the chair these days. I have two permanently sprained ankles and walking is more than a little difficult.   Until you have to be aware, most people don't recognize what it's like to try to get around a place in a wheelchair. Are there good sidewalks? In New Orleans we encountered some terrible  ones that had my husband pushing me down the middle of the road! In Antigua, Guatemala the sidewalks wer...