Salty Zebra

 February 28th is Rare Disease Day. Yeah, it's technically February 29th, but that's, well, rare, so we celebrate it on the 28th on those years that don't have a 29th! Between 3.5% to 5.9% of the World's population live with a rare disease. Why the range? Well, the numbers aren't really accurate. In Western countries where healthcare is readily available, it is still difficult to receive a diagnosis. The average Ehlers-Danlos Syndromes diagnosis takes 12 years. I didn't get diagnosed until I was 43 although I started showing symptoms at a very young age. But when it comes to developing nations, health care is an entirely different story. Even if you get to see a doctor, the odds of them recognizing that you have a rare disease is pretty unlikely. And then, if they do diagnose you, it's unlikely that your case will be counted by a national agency of some type. So, they make their best guess! According to this report :  There are over 6,000 rare diseases, ma...

“They were devoting themselves to the apostles’ teaching and to fellowship, to the breaking of bread and to prayer.”   Acts 2:42 “And let us take thought of how to spur one another on to love and good works, not abandoning our own meetings, as some are in the habit of doing, but encouraging each other, and even more so because you see the day drawing near.”  Hebrews 10:24-25  Fellowship is a pivotal and beautiful thing that has changed how it looks over the centuries since these verses were written. How lovely to live in a small community where we could walk to each other’s homes and the temple courts. If I were even physically capable of it, which I’m not, according to Google Maps, it would take 5 hours to walk one way to my church.  Since Covid, my relationships and engagements have changed as well. Really, it probably started when I finished homeschooling my kids. Back during my homeschooling days, we got together with other homeschooling families at le...

    Dreaming.   Do you do it? I'm not taking about the crazy stuff your brain does when you're asleep. I'm talking about day dreaming, imagining possibilities, hoping for the future.   Having dreams is so important, even if they never come true. I've always had an active imagination.   Sometimes it gets me into trouble, but in this case it can be a real blessing!   For a long while last year I couldn't dream of the future because I was afraid I wouldn't have one.   Picturing possibilities was just depressing because every time I thought of them, I thought of how I might die soon, and, well, that's depressing! You see, in June last year I was informed that my tumor had grown and, based on the measurements we had, it had grownsignificantly .   Prior to this I wasn't really aware that I was in any danger at all from my tumor.   Now I was told it was currently inoperable but dangerous enough that I was being sent to the Brain Tumor Center to se...

 If you've been following along with me, you've probably seen that I use a wheelchair when I cruise . The first thing this involves is getting the wheelchair TO the cruise. For most people this will involve flying and, sadly, airlines do not have the greatest track record with wheelchairs . According to this article , every year between 10,000 to 15,000 mobility devices are damaged during air travel. The Department of Transportation estimates that comes out to about 1 in 100 or 1.4%. Tell me the truth, if you heard that 1 in 100 people lost their legs when flying, would you get on an airplane? That's really what we're talking about here though. For most people who use them, mobility devices represent the only way for them to effectively get around. In the picture above, you may be able to notice that the post on the front right of my chair is bent and the right side of the seat is significantly lower than the left. During our last flight, something  happened that lite...

“Therefore go and make disciples of all nations, baptizing them in the name of the Father and the Son and the Holy Spirit, teaching them to obey everything I have commanded you. And remember, I am with you always, to the end of the age.”  Matthew 28:19-20 “But you will receive power when the Holy Spirit has come upon you, and you will be my witnesses in Jerusalem, and in all Judea and Samaria, and to the farthest parts of the earth.”  Acts 1:8  Yesterday my husband and I had the privilege to worship at “PAINT” church. It stands for Panama International Church. We worshipped alongside people from all over the world, from nearly every populated continent. It was a little slice of heaven. Even when I didn’t understand the words of the songs that were done in a different language, the same Holy Spirit was there, drawing us all into fellowship with one another and with God Himself. The pastor gave a great message that summarized much of what I’ve been learning over the ...

  “Jesus said to him, “’Love the Lord your God with all your heart, with all your soul, and with all your mind.’ This is the first and greatest commandment. The second is like it: ‘Love your neighbor as yourself.’ All the law and the prophets depend on these two commandments.””   Matthew 22:37-39 “’Love the Lord your God with all your heart, with all your soul, with all your mind, and with all your strength.’ The second is: ‘Love your neighbor as yourself.’ There is no other commandment greater than these.””  Mark 12:30-31  Love. It’s a much abused word. I love my husband and I love coffee. What does it really mean to Love God and Love Others? Of course, I am going to visit with my old friend, Webster , to see what he has to say about it: LOVE ,  verb transitive  luv. [Latin libeo, lubeo.  See Lief . The sense is probably to be prompt, free, willing, from leaning, advancing, or drawing forward.] 1.        In a...

 I sat in the doctor's office aghast as he pulled out his phone and Googled "Ehlers-Danlos Syndrome" (I think he even asked me how to spell it). Then, unbelievably, he looked at me and told me that he didn't know who had diagnosed me with this but they were wrong because he couldn't see that I had one of the symptoms mentioned in the Google summary. Yes, this doctor thought that his 30 second Google search "Trumped" my doctor's extensive learning and my 40+ years of living with this condition. This was one of many times I've been dismissed, gaslit, and sent away empty handed from doctors who were paid well to help me. Why? Because I'm a disabled woman.   This is a well-documented issue of women's health concerns being overlooked, women's descriptions of pain being disbelieved, and dangerously, women being underserved. For example, "According to a new study, women may be twice as likely to experience a fatal heart attack compare...