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...

  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...

Her clothing was strong and splendid; And she laughed at the time to come. She has opened her mouth with wisdom, with loving instruction on her tongue. Watching over the ways of her household, she would not eat the bread of idleness.   Proverbs 31: 25 - 27 Over the last few years, several of my traditional jobs have become impossible for me. I no longer clean the bathrooms, and don’t really do the thorough cleaning of the kitchen that I used to. I only vacuum occasionally and sweep even less. At times, I’m not even able to do the cooking or the laundry. There have been moments where I have questioned my role in the family, my worth and value. My husband is so gracious. When I approached him with my concerns, he shared with me that he believes my role in the family is the nurturer. I bring the softness. I help people feel loved and seen. I round out his rough edges and help the kids know he loves them too. In some ways it’s a tall order, in others, it doesn’t feel like quit...

  Whoever speaks, let it be with God's words. Whoever serves, do so with the strength that God supplies, so that in everything God will be glorified through Jesus Christ. To him belong the glory and the power forever and ever. Amen.   1 Peter 4: 11 I’m coming off of a beautiful, but very full weekend. God carried me through for sure! I definitely felt His strength enabling me to entertain, visit, pack, unpack, repack, etc. It was well beyond my usual capacity for activity and He provided. I anticipated that this week would be one where I would be recuperating, and that has proven very true. I have woken up each morning bone-weary exhausted. The pain has been intense. Was it worth it? Absolutely! Would I do it again? In a second! Over the last few years I’ve been learning about the SpoonTheory and incorporating its principles into my life. I’m constantly aware of how much energy I have and how much will be required of me in the rest of my day. I’ve had to learn to say...

  Picture     So how does one live with a brain tumor?  Honestly, I'm still trying to figure that out.  My doctor seems to think that it shouldn't be a big deal.  He's like, "See you next year!" and here I am trying to understand what that looks like.  I have this thing in my brain, embedded in my Cerebellum to the point that my surgeon cannot safely remove it. It *may* be affecting my vision, nausea, balance, etc., but really, we can't know for sure.  I guess the reality is that I should just go about my business, continuing life to the best of my ability, until I bump up against the tumor.  That might look like an appointment with an MRI to check its status, like I had a couple of weeks ago, or it might be symptoms that make me question whether the tumor is affecting things. I have no way of knowing when or if that might happen, except for a scheduled appointment of course, so I have to figure out a way of living life th...

          Let's talk about the Spoon Theory.  It was originally developed by Christine Miserandino and discussed in an article she posted at  But You Dont Look Sick?   It's well-written and very helpful, but I am an incredibly visual person and I never REALLY got the spoon theory until I saw this video by Jessica Kellgren-Fozard.      Essentially, the Spoon Theory is a visual/tactile representation of the limited energy allotted to those with different conditions like chronic illness, disability, mental illness and more.  One spoon equates to a unit of physical/mental/emotional/social energy as all of these are in limited supply for this population.  Most healthy people begin their day with unlimited spoons, the choices and possibilities of what they could do that day are limited primarily by the hours in it, but they're up for whatever comes their way. A person with chronic illness, or one of the other conditions, ...