Thursday, May 15, 2014

Happy Awareness month

Holy cow! 
Each day the though crossed my mind to update here. Honestly the thought overwhelms me. I know that May is Lyme awareness month and yet, the idea that I should help educate on the experience is too much to hand for me right now. Last year I listed symptoms each day until I was out of research. 
Right now, I am in the middle of trying to restart oral treatments. I had more doctors and people who were in a position to help, screw me over, again. they wasted 4 months of my life making me wait and labeling me as crazy. And yet, they still want to pretend to help. Case managers should help, not make the situation worse. 
Anyway, I suppose I just want to warn everyone to double check who they are dealing with and if things feel uncomfortable, look into them. 

Here is my May Awareness:

  • Make sure that whomever you're dealing with is open to dialog and education. 
  • If you have to travel 8 hours to get to a decent doctor, then do it. 
  • If you have to beg for the money for treatment (most of us do, don't judge yourself), then do it. 
  • If friends don't believe you even after the science has been shared, you may need to leave them. 
  • Know the science of this disease. Don't get caught up in the pseudo science. Research. Real books and doctors and published research. Most of it won't come from the US, the CDC is really dodgy about this for political reasons. 
  • Know the political reasons. 
  • (While this may seem hypocritical or ironic:) Don't trust Lyme blogs without checking your research. Now experiences of people like me are fine to trust, but check the science, especially if not sited. 
  •  Be careful with doctors. Don't toss around the L word. You may be banned from entire hospital systems. 
  • Use other Lymies and ILADS to find a doctor. 
In the meantime, like I said, I am back on oral meds. My doctor laid out his dream month of building up to full protocol. This was 4 weeks ago. I am still not up to the 1st week of the dream. It is rather discouraging. But I keep pushing. I won't let go of my dreams. So I get up, I take the first dose. I set a 30 minute timer. It beeps. I take the second dose (different meds). I set the timer for half an hour. I make coffee. Timer beeps. I eat and take the food meds. They are awful. 
At lunchtime, I am not hungry. My stomach still aches from earlier. I have to eat. I have 14 pills to take. My lunch is unenjoyable. Too much water. Too many pills. I tackle it anyway. I feel ill for the rest of the afternoon. Three o'clock. I take more meds. Four o'clock, more meds. Dinner, meds. Pre-bedtime, five pills. Bedtime, nine pills. Hopefully, I will be asleep. Start again tomorrow. Hoping I'll level off a bit so I can move forward on the protocol. I want to get on with all this nonsense. 

So, there you have it. The complications and time commitment of trying to kill off these buggers. Questions? Sources for my research? Just ask.