The Life of Glory

 Porphyria.  When my GP first told me that he was convinced that I have it 6 years ago, I didn't know what that meant.  Today, I still don't know if I actually have it. 1 out of 3 tests was positive but it's rare and no one but my GP will take the idea seriously. So, honestly I gave up. For a few years now. I had one awful year of test after test that nearly damaged my nerves and aggravated my symptoms until all I could do was cry. The pain was unbearable and I was just...finished. Doctors didn't believe me. They told me to see a therapist. So I did. It didn't change anything.  If I do have Porphyria, as my GP thinks, it would explain everything . It would explain the pancreatitis doctors thought I had until my follow up appointment when they realized they had misdiagnosed the problem and had no explanation to offer me. It would explain my seizures and how they didn't show up on the EEG because they aren't an electrical imbalance, but actually neurotoxins in...

In the past, having a seizure while camping would have scared me off from camping. But not this time. I went camping again. We brought a tent and the dogs this time, but it wasn't quite enough. I struggled, I won't lie. I still got uncomfortably cold in the wee hours and didn't sleep well, but I didn't have a seizure . So, I'd call it a win. Next step: buy a 0 degree sleeping bag (wish me luck on finding a good one on sale). Still, it was a spectacular night of a little rain, some reading, wine, stargazing, and comet gazing. What is your favorite part of camping?  I love the sounds of nature. Birds, owls, crickets, the trees rustling in the breeze. Listening to those sounds, I can let go and just be in the moment . When we got caught in the rain and had to hide under a bridge with the dogs for a bit, I marveled. The sound of raindrops  hitting the river while lightning flashed, and thunder roared, was like a symphony. Yep, sounds are definitely my favorite part of ...

I don't know if I would be okay if I didn't have dogs. I have really bad days, difficult but manageable days, "meh" days, and good days. My dogs are unwaveringly there for all of them. To cuddle and play and demand that I think about more than myself. They help keep me going. Even when fatigue grasps me like a chokehold and makes me want to sleep all day. They want nothing more than to be fed, to exercise, and to be near us.  Today I am choosing to be thankful. Thankful for my dogs. Thankful for my partner in life, my husband, who loves to go on the same adventures I do. Thankful for my friends. Thankful for the two robins using the bird bath at work right now, as I sit outside and write this. Thankful for my kayak and all the lakes I live near.  Things are really tough right now, but I have right now  to be thankful still. What and who are you thankful for today? May YHWH sustain you during these very trying times, KELLY ANN

For the longest time I honestly thought my symptoms were just going to kill me someday. I would be laying there completely paralyzed and only able to blink on purpose, waiting to die because doctors had no clue what was going on. And, honestly, I was okay with that. I stopped caring. I wasn't scared. I just embraced each day and stopped denying myself what made me happy.  I have this picture hanging on the wall of my tiny house.  Taking this picture was kind of stupid, but I don't regret it. The falls were so frozen people were ice climbing them that year. So after work on January 14, 2012, I grabbed my dog and we went for a short, late afternoon hike. The falls were so frozen I could only hear a faint trickle of water, and I got this picture from the top of the large boulders around the top. Then it happened. My dog had been a pill the whole 20 minutes it took to get to this spot with my cane to take the picture, but suddenly he really started freaking out. So I stepped back ...

We were camping out. The weather had been gorgeous. We were having a great time. I went to bed feeling great. Then the temperature dropped. I was awoken, shivering and convulsing at who knows what time, with a seizure that lasted until the sun was all the way up. The birds were singing and I was trying not to cry loudly.  Seizures are brutal. There is no way around that. But this was the scene when I got back home around 6:30 that morning and amazingly I recovered rather quickly from the spasms. If quickly means sleeping most of the day and feeling sore but alright the next day. People seem to forget that this is my normal. I have NES and Porphyria, which can also cause muscle weakness and spasms. I don’t feel sorry for myself that I had to quit camping early in the morning because of a seizure. I don’t feel sorry for the pain I felt or the tears I cried. I feel elated that my body recovered as quickly as it did when I was 20. I feel like I’m getting my body back on track to being ...

Eight years. That is how long it has been since I've been able to really push myself physically without dire, couch-ridden consequences. Eight long years of trying and failing to remain consistently active. 2012 was the year I got the flu that changed everything. It took 6 months for me to be able to walk places without having to sleep for two days to recover. Since then it has been two steps forward and 10 steps back. Now, finally , I am doing yoga at home consistently and hiking and bicycling with minor  setbacks. Seriously. MINOR. I don't think I could be more stoked. I really feel like this is the year I can get back on my feet. Build up the muscle I still remember having and keep forgetting I don't have anymore. The year I might even be able to get to a point where opening a jar doesn't cause 10 minute tremors from the effort. I pushed myself on a hike last week and my dizziness had me stumbling and exhausted by the end of it. But one nap and a good night...

I've been reflecting a lot on what Christian's call Holy Week and how it parallels Matzot (or the week of unleavened bread commanded in the Torah).  I never liked Easter with its easter egg hunts and flowery dresses and white lilies everywhere. None of which having anything to do with the messages they were throwing at me about Jesus and his death and resurrection. But when  I started being Torah obedient, the festivals commanded in the Torah as "a law forever throughout your generations, in all your dwellings" changed everything for me. In this case, Matzot. The week including and following the Passover dinner which, today, can only require unleavened bread and bitter herbs while you keep your shoes on and whatever else you put on to go on a journey. A week of "remembrance."  And I am in awe of Matzot this week. Messiah came and made all of YHWH's festivals that much more meaningful and beautiful, but this  festival is full of  promise . Wher...