Yay!!!!

after several months of waiting, I believe I am finally having another episode of intermittent Porphyria. Stabbing pains in abdomen, hands and feet began on friday and I now have a low grade fever, difficulty eating and going to the bathroom and my urine came out kinda pinkish this morning. Yay!!! This is what I have been waiting for!. I will begin the 24-hour test first thing in the morning. I have never been so giddy to be in so much pain...lol

A weird day

It's been a weird day. Numbness in lower left side of my face (around ear and jaw), stomach upset and pain, bad heart burn - which is very very rare for me - and a sharp pain in the center of my chest (which has since gone away) that increased when I exhaled. My heart rate has been slower than usual, hovering in the 75ish range most of the day, only a few spikes above 100. Still very weak and shaky. I feel best right after I eat. An hour or more after, I feel like I will pass out from lack of food, as if my blood sugar has suddenly dropped, even tho I know that's not possible. Also, in the last two days I have begun to suddenly shake and sweat when lying down, feeling like my heart is beating very hard...like a tiny hammer in my neck. It usually subsides within an hour.

Episode

having a not so fun episode today. Lying in bed and felt suddenly chilled. Began shaking badly and felt I might pass out. Heart thumping real hard and fast in my chest. I managed to get to my feet and hobble to the kitchen to check my heart rate..it was 120. I ate something and had some cold water which did help slightly, then laid back down. I still feel very shaky and weak. Not sure what happened but will keep an eye on my heart rate and call for help if it gets much worse.

Fed up

After several very bad days in a row I have become fed up with the 'wait and see' approach regarding my treatment. My main goal now is to get to San Diego for hyperbaric oxygen therapy as quickly as is humanly possible. In my effort to raise funds I have contacted radio stations, news stations, friends, family, my former boss and the administrators for several online message boards I belong to. My plea for assistance has been neither polite nor watered down. I am desperate, my life is in danger, and I will not rest until I receive the help I need, or this disease takes my life.

*insert foul language here*

My patience with the social security administration is wearing thin. I completed the first part of my second appeal electronically and printed confirmation and my re-entry pass code on the 25th of this month. The system would not let me back in today to finish the appeal stating that I had an incorrect pass code and would have to start the process over. I started a new appeal and the system would not accept "Jessica" as a legitimate first name, and therefore would not let me continue. I called the toll free number listed on their website and was told they have no tech support, and to finish my appeal I would have to go to their office and fill out the paperwork there, or have it sent to me. I am going to go cuss loudly now.

Tired and thirsty

I've been having bad headaches the last few days and trouble falling and staying asleep. Even with the aid of acupressure and sleeping pills I am unable to stay asleep for more than a few hours at a time. My dreams have also been very strange. Last week I woke up screaming - something I don't recall ever doing before - even though the dream I'd just had wasn't particularly scary. My psychologist said it was probably a night terror. I really hope this phase of not sleeping well passes soon, as I'm getting weaker and more fatigued from lack of sleep.
Another strange symptom I've had for about a week now is feeling constantly thirsty but no matter how much I drink, my throat feels dry and my thirst does not go away. And my urine goes from clear, to dark and cloudy, to clear and back again. (shaking head)

Snnnaaarrrllll

Doctor did not call me back on Tuesday and I have called her every day since requesting that she call me back (snarl). Her receptionist called this afternoon to set up another phone consultation next week.
Neuro symptoms are increasing again after a short break - Jerking legs and arms. I'm still walking ok without cane and have only needed my wheelchair once in the last week, so I hope that continues for a while. Right now I feel very "blegh". Tired but cannot stay asleep, heart rate elevated and some tummy trouble to go with the jerking limbs. Fun!
Some good news tho, I finished the first part of my appeal for disability online. The second part is a bit more involved but can also be done online. Whew!