The Life of Glory

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 cha...

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 ...

I was washing my hands in the bathroom, coughing through my sore throat and cold. But when I grabbed for the hand towel, I went down . I felt my muscles weaken and get heavy underneath me as the world started floating around me. I fell hard on my knees and before I could steady myself, my shoulder slammed into the ground and my head followed suit. All I could do was cry. Alone. Unable to call for help. Unable to get up for who knows how long. 5 minutes. 10 minutes. 20 minutes. I didn't have a clock or a phone. When I got back to our tiny house, tears rushing down my face and new bruises forming, I didn't have the strength to open our finicky door.   This is life with Porphyria/NES. But when it's done, it's done.  I am not sharing this so you feel sorry for me. I am sharing this because within it is my greatest comfort. There really is a time for everything and none  of it is bad . People shy away from you when you're suffering because let's...

Muscle weakness may last just a couple of days sometimes, but the emotional struggles it triggers linger much longer. Each day is one task at a time, pretending that I'm not afraid it will happen again. Especially now, as work is extremely busy, I push away the anxiety that threatens me around every turn. I have to remind myself that I can only do what I can and I have to be okay with not doing what I cannot.  It has taken me years to recognize this. That there are things I cannot, in fact, do.  ...and that is okay. Saying you can't do something is not saying you can't do anything .  So I stop to smell the wildflowers, make time to read, play Solitaire or Kings in the Corner. Whatever I can make time to do to quiet my mind and think of nothing or anything else. But most importantly, I focus on people.  The people around me don't care if I use a cane, or don't come to work for a couple days, or need to ask for help with a few meals or with my dogs....