Salty Zebra

   I wrote recently about Learning to Live Within My Limits . Lately I haven't been succeeding at that very well. Instead, I've been, "Living in the Pink." In my Visible app, my points show up as blue when I am at or under my limit. When I go past the tracker during the day, it shows up as yellow because I still have a chance to rest and get back under my goal. But once the day is done, if I have used more points than I should, it turns to pink. I guess they felt like it was a gentler color than red. For the last six days, I have not stayed under my goal. Yesterday I only surpassed it by 0.1 points, so I feel like the pink is not fully deserved, but other days I went over by as much as 10 points, more than 30% of my planned total.   So why do I care? It's in the past, right? I care because my points overage doesn't stay in the past. Each day I go over affects the next, and sometimes more. When I have a stretch like this of days in a row of going over, it can t...

Hey there! I'm an Amazon Associate, which means I earn a commission when you click one of these links and buy something. This does not change your cost at all.  I don't know about you, but I can totally identify with the family in this picture! Now, I would certainly never sit where they're sitting, but sometimes the world can feel like this in even common situations. I mentioned in a post a few days ago that I struggle with light sensitivity. I also have a hard time with noise. This can be an extreme thing, like a concert (or any given Sunday at our church), or something as simple as a fan or water running. It takes on two presentations: I can't hear or process things well if there is background noise and lots of noise tends to overwhelm me and make me shut down.   What do I mean by shut down? It was really extreme before my brain surgery last year. We were at Disney World celebrating our 25th wedding anniversary and the noise/stimulation got to be so much that my bra...

   I've always been a bit of a, "glass is half full" gal. My default is to find the positive in a situation, which sometimes annoys my family, but I hope overall has given them a better experience. One common phrase we use about this is, "Seeing the world through rose colored glasses." This phrase is not always intended positively as some people perceive this outlook as a negative. They would contend that I am not adequately preparing for the trouble that might come my way or that I'm getting my hopes up unjustifiably. My husband, for example, is more of a preparer.   One of the big shifts that came to our household from Covid was the backup pantry. Many, if not most, people have a pantry. In ours we mostly store backups for open items in our kitchen. For example, if there's an open bottle of ketchup in the fridge, there should be a sealed one waiting to replace it in the pantry. When scarcity came to town in March of 2020, the backup pantry was born. It...

  I wrote earlier about my Visible arm band and tracker. They have certainly changed my life, but it hasn't all been easy, and I'm not done yet. One of the hardest things about chronic illness is acceptance. For many people, this is why diagnosis is so important to them. Until they have that label to validate how they feel, they can't fully believe it. I know it was this way for me, but the road to diagnosis is long, and windy, and there seem to be bridges out periodically.  When you've spent so long, for some their entire adult lives, switching between trying to convince the doctors and your loved ones that there's something wrong with you and then convincing yourself that's you're probably ok because they can't find anything wrong it really messes with your mind. Sadly, for many people when they finally are  diagnosed, they are told that there is no cure, little or no treatment, and they just have to live with it. Oh, and it might kill them too. That...

  I've been using the Visible app with a Polar tracking armband for about six weeks now (I used it without the arm band for over a month before this). I wanted to wait to share about it with you guys until I felt I had a really good idea of how it was going to affect my life. I almost wrote about it last week, but I felt like a hypocrite writing a post about how much better I was feeling when I had a terrible migraine. I decided to write this post today because what I've learned is that this is a process and I will continue to learn as I go. I don't know it all or understand it all yet, and maybe I never will! Visible  is an app that helps to make invisible illness visible. If I had a broken leg in a cast or if I had lost my hair to chemotherapy treatments you would be able to tell by looking at me that I was going through something. Many chronic illnesses, however, don't present externally. Just search for "But You Don't Look Sick" and you can be entertai...

  First off, I want to thank those of you (you know who you are!) who have contributed to my December blog fundraiser. I'm currently halfway to my goal! If you'd like to learn more, click here , or if you'd just like to donate, click here . And now onto what I'd like to share about today... I've been looking forward to sharing with you about my recent solo cruise I took at the end of October/beginning of November. If you've been with me for a long time, then you might remember that I took my first solo cruise in November of 2022 on the MSC Meraviglia. This was also my first cruise taken on a line other than Norwegian and my first time in an inside cabin. I don't do things by halves! I had planned to continue this in 2023, and even had a couple of cruises booked, but my plans were stopped short when I learned in February of 2023 that I had a brain tumor . I underwent surgery to resect as much of it as possible, and then two more surgeries to deal with the si...

Gaslighting, in particular medical gas lighting, has received a lot of attention lately. According to this excellent article by the Cleveland Clinic, "Gaslighting is a form of emotional abuse and mental manipulation that will leave you questioning your own reality and have you wondering if you’re in the wrong in nearly every argument." For an in-depth look at medical gaslighting, you can check out this video . Because of all the awareness, gaslighting is on my and my husband's radar. When we are in medical appointments, he makes sure our questions are answered and my symptoms are noted appropriately. So I was totally taken off guard when I encountered the reverse of this, toxic positivity. Positivity sounds, well, positive, right? Did you know that it can be taken too far and become detrimental? I didn't. A couple of years ago I had my first appointment with one of my doctors, a surgeon actually. I won't name him here because the purpose of this post is not to ca...

This week I had the wonderful blessing of being able to attend the EDS Society's 2024 Global Learning Conference in Philadelphia. This year's theme was EDS from Head to Toe and they covered how EDS affects bodies in every area.  EDS is a collection of genetic conditions that affect the collagen in a person's body. There are potentially more than thirteen different types. I have the most common of these, hEDS or Hypermobile Ehlers-Danlos Syndrome. At this time, about 1 person in 5,000 is diagnosed with this, making it a rare disease. Experts believe, however, that it is drastically under diagnosed and that the incidence is far more likely to be 1 in 500, making it as common as diabetes. So why isn't it diagnosed more? Simple. Doctor's don't know about it. In most medical schools, EDS is a paragraph in a chapter about rare diseases at best. Unless they are exposed to it for some reason, most medical professionals don't have EDS on their diagnostic radar.  So w...