When the rubber meets the road

I was always heavier than I wanted to be. I'd have friends and sisters that were rail thin and I wanted to be the same. I was on weight watchers and going to a gym by the time I was 14. I was always mad at myself that I couldn't just stick with skinny foods. The fact is that I love carbs most of all and like to eat until I am very full. I haven't considered myself an emotional eater until a couple days ago when something gave me anxiety that I saw on facebook. I suddenly wanted to turn on the TV and eat something crunchy. It was a dramatic moment where I realized solidly that I want to check out and use food for comfort when I'm scared or anxious. I know that I've been eating differently since Covid-19 entered our life and our country flipped on it's head too. As a believer in the living God, that means I don't lean on Jesus when I'm scared which is something I want to change. By the time I was graduating from college, I had found my way. I was very ...

It was a busy 1st day. I am working remotely and that adds an interesting layer to this experience. I needed to return a rental car after getting gas twice because of faulty gas pumps and running to Target. The day flew by. Kiyomi is also working and she is in her 3rd day of fasting already and pretty miserable. I was up at 6:30 naturally. Up and ready for doctor and nurse visits, wondering if I can start fasting because I am titrating off of Prednisone which says it should be taken with food. I learned from the doctor here that I can't fast because of what the steroids do to the body and you don't want to be in ketosis with it. Stopping abruptly can cause problems so I will keep reducing until Thursday or Friday when I can start fasting. It isn't bothering me - just eating their vegan no SOS (salt, oil, sugar) food is good for me. Eating this way ("clean") can make the fast easier on the body too. I'm not in this for some short term extreme thing this time....

Hi there, I hope you're having a wondering Sunday. I am listening to this awesome Podcast called BEMA Discipleship that helps people learn to think Hebrew in terms of scripture. It's so interesting; I've always been interested in the Jewish history and culture. I never knew the importance or emphasis on the Sabbath, really. I want to find a way to really honor it as "as space for just God and me." When I was at True North before, Kiyomi and I had put down a deposit to come back again this week for another 21 day fast with about 10 additional days of refeeding. When I started Belinostat, I thought I couldn't leave for that long so I just wrote it off and another friend was thinking about taking my space. Recently Kiyomi and her hubby met Andy and I for a little socially distanced camping/quadding trip and she asked me if I was going. The friend backed out and it dawned on me that I actually could. I can work remotely from there, I don't have treatment t...

I was reminded the other morning how important it is for people to be heard. I sometimes wonder if that is one of the problems with this crazy time we’re all living through. People feel talked at by the news, social media, others with all their opinions of what is going on politically, with  Covid-19, spiritually, socially. I call it a mic-drop culture where people want so badly to be right and we are overwhelmed with conflicting information, so we just aren’t listening.  Writing my thoughts and being aware that some people actually read them can feel daunting and, as I’ve shared before, can make me feel exposed and vulnerable. But, I was reminded again, by such a sweet message yesterday that there are people who are actually interested in my thoughts. Thank you! I wonder how much this has helped me over this past few years of processing the diagnosis and prognosis. Somewhere down deep I have been helped and healed by feeling “heard” through you and I am grateful....

Sorry it's been so long. We have really been on the run. We hope we are not making mistakes in being exposed to so many people lately. We went on a 10 day camp trip with 25 different people coming and going. It was so great to be with our kids except Nolan who was in CA building his new business. As far as my health...it's really hard to sum that up right now. Essentially we've decided the Belinostat isn't working. I have the IVs for 5 days, feel terrible most of that week and a few days afterward but the "constitutional symptoms" do subside. The swelling in my throat that makes it hard to sleep improves. My wrists get to look more normal and I've even been able to wear rings. But...by the 2nd week off, the symptoms start to come back, often with very weird and varied aches and pains. It can be a swollen and painful knee this round or swollen ankles or toes another. Additionally, I am getting patches of what could be the cutaneous form of AITL. Last we...