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still going strong: a brief update

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  Our son is growing healthy and strong. I know this by the steady 156 heart rate the doppler records every doctor visit, the strength of his kicks in my side and the punches to my bladder. It is truly extraordinary. My body has been malfunctioning since I was 19 and here it is perfectly making a healthy baby. Almost 16 years of not trusting my body because of seizures, muscle weakness, mental confusion, and dizziness. Yet here I sit, the healthiest I have ever felt with my son wiggling inside my womb as I type. I am counting down the weeks until I get to meet our little Sammy Ray in awe. Both because I am excited and because I am growing increasingly uncomfortable. Mostly though, I am excited to hold him and watch him discover the world.  Meanwhile, this summer is full of record heat and massive fires surrounding my small haven in the Sierra Mountains. The one blowing smoke into our neck of the woods is over 180,000 acres and threatening a neighboring town just 30 minutes from my hou
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Yes, I'm pregnant and it's a good thing

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Many have been concerned about the fact that I'm pregnant, so let me set you all at ease. Once upon a time, doctors were not sure what my health issues were and serious consequences arose to the possibility of me getting pregnant (such as permanent paralysis). Then, I got a new GP who referred me to many specialists who ruled those possibilities out.  My GP then reached the conclusion that I most likely have something called Porphyria. A very rare, hereditary blood disease that literally explains all  of my symptoms (consequently, many can carry the disease without any symptoms). Thus far, they have not been able to definitively prove or diagnose me with Porphyria, but living like I have it has proven to help me manage my symptoms.  Once my doctor deduced this possible diagnosis, he told me I should get pregnant.  Studies have shown that menopause, for instance, can lessen symptoms or completely cure symptoms of this disease due to its sensitivity to hormone changes in the female b
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jumping through hurdles

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 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
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To camp.

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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
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getting through it

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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
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maybe I'm strong, or maybe I'm just stupid and stubborn

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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 a
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to camp or not to camp?

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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 capa
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