Salty Zebra

  Did you know that there is a maximum dose of radiation that has been determined for each human body organ? This is a lifetime limit called the organ tolerance dose   because radiation damages the tiny blood vessels inside organs, causing them to progressively narrow and scar — a process called obliterative endarteritis. Over time, normal tissue is replaced by stiff, fibrous scar tissue that has little capacity to function or heal. These changes are largely irreversible (1). So, with few exceptions, radiation therapy is a once-and-done treatment. The image above is of my treatment plan with the different colors representing different levels of radiation being delivered. The red in the center is the highest dose and the blue at the outside the lowest. This means that my scalp received the least amount of radiation, and therefore the lowest side-effects, like skin redness and hair loss. That doesn't mean I didn't experience it at all, but it was limited as much as possible: ...

  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 .  There's lots to do before I start radiation in 35 days, and I have to prioritize. When looking at my list, one of the hardest things was cutting my hair. Three years ago, I had three brain surgeries which resulted in a shaved head at the end. That was a tough decision at first, but when I found that I would have several strange, shaved patches, and I had spent two weeks in the neuro ICU not being able to wash or care for my hair properly, it got a little easier. After surgery, I very much wanted to grow my hair back out. There's something about my body and brain that tell me I need to put my hair in a ponytail. If I can't, I just don't feel right. One year later (exactly one y...

Warning: I get a little outside of my standard writing style in this post. As my husband says, I am usually "flowery" and subtle in the way I present things. Today I'm being brutally real.     I've mentioned lots of times on this blog the fact that I have Ehlers-Danlos Syndromes (EDS), but I thought that today I would share a little of what that means to me. It's hard to know how to communicate this to people who don't share my experience. For example:  I am never not in pain. Do I take pain meds? Yes. I take a great deal of pain meds. But no, they don't take my pain away. What they do is (sometimes) take my pain down to a level where I am able to function. My daily functioning pain level is more than many people will experience in a year. Is it easier for me to deal with pain because I am so used to it? No. No, it is not. In fact, the ongoing, constant, chronic pain builds on top of itself over and over and makes it MORE difficult to deal with. I just do...

 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...

   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...

  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 enter...