Great Article

I meant to post this sooner but I got caught up in life...

Patient Websites Used for News, Support in Crisis

A great article about patient websites...

Back to the Drawing Board

Well it looks like I get better diagnosis’ from my community of friends than I do from my docs who don’t even know some of the tests I mention or understand rare diseases; of which they all agree I have one of the many types.

For the past three weeks I have been having major headaches that don’t seem to go away even with treatments that I currently have. I also found out I still have my brain tumor and those in my head/neck area from a new MRI. But since they are slow growing they don’t want to do anything. Umm, excuse me, the patient here would like a treatment or something done so I can live or at least ride in a car without being violently ill. In part it may be my fault for fearing the docs who keep screwing up and my last experience in the ER where they took two days to figure out I had sodium and potassium issues and almost went into a full-blown coma. Seriously though, I know they will only give me an IV fluid and the same pain meds I have at home, it isn’t like I haven’t had to manage this in the past but perhaps the next time I will go and have a CAT scan and stuff to see if the problem shows up better than just a tumor sitting there. Maybe it would show it torturing me like a chicken is when their heads are cut off and allowed to run around the lawn.

I have plans to see all of my docs one last time this week and next and if nothing new is done I am going to once again find a new line up of docs who specialize in Neuro Endocrine Cancer since my tumors and labs all line up with this rare type of cancer…especially since my labs do show that I have some cancer and rare cell abnormalities running around in my blood. I have a couple and one woman is going to help me get an appointment at a specialized hospital that can help me take care of all these things or at least get treated properly. Too bad they are not in NJ or NY so it may complicate things if treatment is ongoing. I’m still debating but I do know there needs to be a change since everyone I know is sick of worrying about me and I am even more so.

I worry about everyone who worries, about those who don’t worry, about keeping my insurance, about whether I will make it to the doc for my appointment since I can’t drive most days due to my head or stomach. I have a mass or a few in my liver and I can rarely eat food and digest it…hurts like hell! So I mainly try to eat solid food but have invested in a juicer to help me get some more nutrients to keep my health and energy up as much as possible. I use it a few times a day. It seems to help but my headaches are getting stronger and longer and my stomach is just a whole other story.

Anyway, as I see more docs I will let you know what happens but it looks like I will be finding a whole new team that understands what disease I have and how to treat it. Right now I will just rest and try to heal and enjoy the brief moments that I am feeling well enough to leave the house for more than a doc appointment…oh I got my old silver/mercury fillings out since they are thought to increase brain tumors. Since I had one and have another I am going to hope this slows them down. My dentist recommends a metal test for me though since I seem to have a few symptoms of poisoning.

Blah, blah, blah, more tests and new docs; what more could a girl wish for in life?