As I write this today I am not fully recovered but will try my best to convey what my latest experience involved. Am writing this with my right eye closed as a matter of fact. So anyway ... what I want to write about in my blog today is reflective of years of chronic illness that I merely pushed off as hormonal induced migraines that we women had to bear in life. Of course ... I think I know better now. Not that hormones cannot play a role in this illness but that I know the true instigator I believe.
Last weekend was a joyous one. On the recommended supplements, etc. I had worked my way back to feeling so much better and stronger. My light intolerance was at a low after coming off the MP in April. My darling hubby and I spent last weekend working on erecting our little greenhouse kit on one of the warmest most pleasant weekends thus far this summer. I had our patio umbrella up and rested in the shade of it between working in the sun as needed. Regardless I ended up with a slight sunburn on the tops of my feet and the back of my legs. This alarmed me but I seemed alright then.
By Sunday night I felt the shift. My mood shifted to the familiar "troll queen" when I knew I was headed into trouble. I bit my tongue and told my DH that I was overly tired and was best to avoid me. He is a wise man and complied. The first red flag symptom and one that I had thought buried long ago until again it erupted. A tooth with a root canal and crown began to have pain around it. Not a good sign but I basically ignored it at the time thinking maybe I had bit down too hard with it and flared it up from that or something? I know now I was not ready to admit the truth.
Monday and Tuesday I was progressively feeling worse. Then last night I was slammed with the worst pain in the right side of my head ... teeth, sinuses, eye and brain ... which always causes nausea for me as well. I had not had one of these full blown attacks in this particular familiar fashion for a very long time. On the MP the Benicar had kept this at bay but now what do I do? I am thinking ....
What I have learned here kicked in. I thought ... evidently I needed more moppers. As ridiculous as it seemed to me I put an entire roll of Smarties in my mouth. While laying in the dark on my bed holding my head I began sucking on them as hard as I could to get the juices flowing. After the first roll entered my system I honestly felt the pain go down a tiny bit. Enough to encourage me to do it again with a second roll of Smarties. I began to feel some more pressure release and then my nose began to plug up and then drip liquid like water. This dripping and sneezing continued for hours until at bedtime I was feeling much less pain and nausea. It was an intense battle for over four hours of excruciating pain and nausea but amazing to me just with the aid of Smarties I made it through it.
So I think if I learned anything from this experience ... I would venture to say that the sun exposure increased the vitamin D in my body which made my immune system kick in which caused Cpn secondary porphyria. I also know I definitely have Cpn infection in all the same places I always have had it. These areas are either numb or burning and sore today like signal fires. Feeling beat up but smarter. So wondering ... have I got this figured out correctly? OR could it be the cryptic or RB form also bloomed so to speak? (heat shock protein) OR maybe both?
Many thanks again for all you folks do here. Blessings. MM